MedWorm provides a medical RSS filtering service. Over 6000 RSS medical sources are combined and output via different filters. This feed contains the latest medical blog items that have been tagged with 'alpha'. Sat, 03 Sep 2011 02:06:35 +0100 http://www.medworm.com/index.php?rid=5140183&cid=t_240560_136_f&fid=37846&url=http%3A%2F%2Fhealthinfoispower.wordpress.com%2F2011%2F08%2F17%2Fpenns-genetically-modified-t-cells-create-antitumor-effect-in-mice-with-folate-positive-ovarian-cancer-clinical-trial-pending%2F In a recent issue of Cancer Research, researchers from the University of Pennsylvania showed for the first time that engineered human T cells can eradicate deadly human ovarian cancer in immune-deficient mice. A clinical trial involving the modified T cells is expected to be announced within the next few months. In a recent issue of Cancer Research, Daniel [...] (Source: Libby's H*O*P*E*) Libby's H*O*P*E* blogs http://www.medworm.com/rss/comments.php?id=5140183 Wed, 17 Aug 2011 22:50:23 +0100 5140183 http://www.medworm.com/index.php?rid=4960274&cid=t_240560_136_f&fid=37846&url=http%3A%2F%2Fhealthinfoispower.wordpress.com%2F2011%2F06%2F21%2Fharvard-scientists-image-beginning-stages-of-ovarian-cancer-metastasis-cancer-cells-bully-their-way-through-normal-tissue%2F According to a study reported in the Cancer Discovery journal, scientists at Harvard University imaged the beginning stages of ovarian cancer metastasis, and identified a mechanism used by cancer cells to bully their way through normal tissue. Scientists at Harvard University have created a laboratory model using time-lapse video microscopic technology that allows observation of early [...] (Source: Libby's H*O*P*E*) Libby's H*O*P*E* blogs http://www.medworm.com/rss/comments.php?id=4960274 Tue, 21 Jun 2011 22:49:55 +0100 4960274 http://www.medworm.com/index.php?rid=4744806&cid=t_240560_83_f&fid=34856&url=http%3A%2F%2Finsidesurgery.com%2F2011%2F04%2Fbenign-prostatic-hypertrophy-bph%2F Pathophysiology 1) hyperplasia of glands with or without hyperplasia of smooth muscle cells in the prostate 2) occurs mostly in transistion zone surrounding the urethra 3) resistance to flow eventually weakens the detrusor muscle Signs and Symptoms 1) urinary frequency 2) difficulty initiating voiding 3) diminished stream 4) incomplete bladder empyting with postvoid leakage 5) nocturia 6) recurrent UTIs 7) renal insufficiency 8) hematuria 9) diffuse enlargement on rectal exam Characteristic Test Findings Laboratory – 1) increased PSA Histology/Gross Pathology 1) enlarged gland compresses urethra 2) hyperplasia of glands and stroma Inheritance/Epidemiology occurs in > 90% of men by age 70 Treatment 1) finasteride to decrease prostate size and increase flow rate (inhibits 5-alpha reduc... Inside Surgery blogs http://www.medworm.com/rss/comments.php?id=4744806 Sun, 24 Apr 2011 06:00:36 +0100 4744806 http://www.medworm.com/index.php?rid=4414546&cid=t_240560_107_f&fid=36672&url=http%3A%2F%2Fwww.sciencebase.com%2Fscience-blog%2Fseven-slices-of-science-stuff.html from David Bradley Vuja de – Thinking outside the box with new eyes? Haven't we see this managerial psychobabble before or is it just vuja de? Alchemist Newsletter – An element close to every Alchemist's heart, quicksilver, or more properly mercury, featured in the chemistry news roundup this week, as does the creation of life from the primordial soup and how that may have begun. In the world of agrichemicals there is a possible sting in the tale for a relatively new class of pesticides, although no definitive evidence is yet available. In materials science tiny, but microscopic particles can undergo self-assembly it seems, while depressing news emerges from Europe regarding the lack of efficacy of an antidepressant drug marketed there. Finally, a new, free chemical... Sciencebase Science Blog blogs http://www.medworm.com/rss/comments.php?id=4414546 Sat, 29 Jan 2011 16:00:08 +0100 4414546 http://www.medworm.com/index.php?rid=4326962&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FIoWl_uOpcks%2Fed-brailey-in-tribute.html When I met Ed in 2005, I was a newbie to the Alpha-1 community. He and I were elected to the board of the Association that year. Previously, I had read his story in the Foundation's Alpha 1-to-1... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=4326962 Sun, 09 Jan 2011 00:22:00 +0100 4326962 http://www.medworm.com/index.php?rid=4309564&cid=t_240560_87_f&fid=34816&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FHonestMedicine%2F%7E3%2FBMUfBL4I-zc%2Fintegrative-physicians-praise-the-just-published-honest-medicine.html Drs. Julian Whitaker, Ronald Hoffman, Jeffrey Dach—and others—praise HONEST MEDICINE. Those of you who have read my just-published book, HONEST MEDICINE: Effective, Time-Tested, Inexpensive Treatments for Life-Threatening Diseases, know that several well-known integrative doctors have written testimonials for it. I have included them in the book. I am very grateful to these doctors for their support, and would like to thank them here by sharing their kind words with you. In another post, I will share the testimonials of several others. But for now. . . Julian Whitaker, MD, Founder of the Whitaker Wellness Institute, Editor of Health & Healing newsletter, and author of many best-selling books, including Dr. Whitaker’s Guide to Natural Healing, Reversing Diabetes and Reversin... HONEST MEDICINE: My Dream for the Future blogs http://www.medworm.com/rss/comments.php?id=4309564 Mon, 03 Jan 2011 21:33:40 +0100 4309564 http://www.medworm.com/index.php?rid=4241668&cid=t_240560_83_f&fid=34856&url=http%3A%2F%2Finsidesurgery.com%2F2010%2F12%2Fglucagonoma%2F s are neuroendocrine tumors that arise in the alpha cells of the pancreatic islets. These tumors secrete glucagon and the diagnosis is made by elevated serum levels. These tumors are signs and symptoms of diabetes, hypercoagulability, and the pathognomonic skin rash of necrolytic migratory erythema, which is the presenting feature in 70% of cases. There is sometimes associated stomatitis and glossitis. Glucagonomas are rare but are malignant in 50%-100% of cases. (Source: Inside Surgery) Inside Surgery blogs http://www.medworm.com/rss/comments.php?id=4241668 Wed, 08 Dec 2010 06:21:39 +0100 4241668 http://www.medworm.com/index.php?rid=4225467&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FuIh_tNGgdPw%2Fall-right-words.html During our nightly prayers, I added a new name to the very lengthy list of angels and those battling illness for which we pray. Meghan peered up at me from her bed with love on her face along with... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=4225467 Thu, 02 Dec 2010 21:32:00 +0100 4225467 http://www.medworm.com/index.php?rid=3790813&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FKmwipNB0wE0%2Falpha-1-antitrypsin-deficiency-video-on.html GENETICS from Alpha-1 Association on Vimeo. [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=3790813 Tue, 27 Jul 2010 04:50:00 +0100 3790813 http://www.medworm.com/index.php?rid=3772352&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F_kHcRih38YQ%2Falpha-1-antitrypsin-deficiency-in.html CHILDREN from Alpha-1 Association on Vimeo. [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=3772352 Wed, 21 Jul 2010 03:22:00 +0100 3772352 http://www.medworm.com/index.php?rid=3746704&cid=t_240560_87_f&fid=36050&url=http%3A%2F%2Fblisstree.com%2Flive%2Fskin-sensitivity-foods-that-make-you-burn%2F Unfortunately, skin care in the sun isn’t as simple as slapping on some SPF and reapplying as the day wears on. Food, creams, and medications all can make your skin more sensitive to the sun. Check out this CBS clip on things that make sunburn worse. But don’t freak out when you see the margarita among the forbidden foods — it’s only bad if you rub it directly onto your skin. Which we don’t do that often – on purpose, anyway. via The Huffington Post Post from: BlissTree Skin Sensitivity: Foods That Make You Burn (Source: Breastfeeding 1-2-3) Breastfeeding 1-2-3 blogs http://www.medworm.com/rss/comments.php?id=3746704 Mon, 12 Jul 2010 20:33:22 +0100 3746704 http://www.medworm.com/index.php?rid=3721981&cid=t_240560_160_f&fid=36189&url=http%3A%2F%2Fwww.skinmdblog.com%2F191%2Fnatural-advantage-skin-care-products-review%2F Natural Advantage skin care products are available direct from the manufacturer and through numerous retailers.  Are they the right choice for fighting wrinkles and other signs of aging?  Let’s take a look at the ingredients. The daily moisturizer has an SPF rating of 15.  It contains alpha hydroxy acids. Alpha hydroxy acids have been included in anti-aging products for years.  There’s nothing “new” about them. While they may be beneficial in some ways, they can also cause irritation.  There are more advanced ingredients on the market. The SPF rating of 15 is something that has been recommended for protecting against sun damage.  There are many controversies surrounding regular sunscreen use.  You will have to decide if it is the right choice for you.  There are alternative... Skin MD blogs http://www.medworm.com/rss/comments.php?id=3721981 Fri, 02 Jul 2010 11:18:31 +0100 3721981 http://www.medworm.com/index.php?rid=3723374&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FTiOuVMl5hDU%2Fbreathe-in-breathe-out.html Sitting on a vinyl covered bench in the lobby of the hotel, I found myself people watching. I was waiting for the bus to return from Epcot with my family on board. I was ready to go home. The suit... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=3723374 Sat, 26 Jun 2010 02:05:00 +0100 3723374 http://www.medworm.com/index.php?rid=3625797&cid=t_240560_160_f&fid=36189&url=http%3A%2F%2Fwww.skinmdblog.com%2F143%2Fskin-peels-with-citric-malic-lactic-hydroxy-and-glycolic-acids%2F Skin peels are offered by spas, dermatologists and cosmetic surgeons.  A mild chemical peel can be purchased over the counter.  Here’s a look at the different ingredients and what they can do for you. Citric Acids Citric acids can be derived from any citrus fruit.  Limes, lemons, oranges and pineapples are commonly used in skincare products, especially daily cleansers. While the mild acids will not provide a significant improvement after a single application, when used on a daily basis they may provide a gradual improvement.  They work to break up excessive oil and dead skin cells, which is beneficial for whiteheads, blackheads and acne prevention. Lactic and Malic Acid Many of the over-the-counter exfoliants contain a combination of citric, lactic and malic acids.  Lactic acid may ... Skin MD blogs http://www.medworm.com/rss/comments.php?id=3625797 Thu, 03 Jun 2010 13:40:45 +0100 3625797 http://www.medworm.com/index.php?rid=3526970&cid=t_240560_160_f&fid=36189&url=http%3A%2F%2Fwww.skinmdblog.com%2F38%2Fcan-oral-supplements-prevent-wrinkles%2F I recently came across an ad in the magazine for an oral supplement that claims to fight dull, wrinkled, pimpled skin.  It boasts of 11 “essential” nutrients which are mainly antioxidants plus some other ingredients.  Taken daily, the pills hold promise of glowing skin in a couple of months. I don’t know about pimples but there is growing evidence that oral antioxidants could help slow down the wrinkling process or even improve existing wrinkles. The problem is that there are a lot of antioxidants available.  How do we know which ones really work? What is the best way to get them to work on the skin? It has been shown that selenium taken at 50 to 200 micrograms daily, vitamin E at 400mg /day and vitamin C at 500-1000mg (all known antioxidants) can protect against harmful UV rays w... Skin MD blogs http://www.medworm.com/rss/comments.php?id=3526970 Sat, 01 May 2010 15:15:31 +0100 3526970 http://www.medworm.com/index.php?rid=3433052&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F44B9S_TDaus%2Falpha-1-sucks-life-right-out-of-you.html This video is a public service announcement from the Alpha-1 Foundation. I know it is controversial but in my opinion, it is a fabulous advertisement. It grabs your attention, and that is exactly... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=3433052 Fri, 02 Apr 2010 04:07:00 +0100 3433052 http://www.medworm.com/index.php?rid=3266858&cid=t_240560_83_f&fid=34856&url=http%3A%2F%2Finsidesurgery.com%2F2010%2F02%2Fovarian-tumors-primary%2F Pathophysiology 1) neoplastic transformation of the ovaries (can be malignant or benign) 2) classified by cell origin of abnormal growth – epithelial (70%), sex cord stromal (5%-10%), or germ cell (15%-20%) tumors Signs and Symptoms 1) abdominal pain 2) bloating 3) urinary frequency 4) constipation 5) palpable pelvic mass on gynecologic exam 6) granulosa cell tumor (type of sex cord stromal tumor) causes vaginal bleeding and precocious puberty 7) Sertoli/Leydig cell tumors cause virilization and hirsuitism generally do not become symptomatic until late stage Characteristic Test Findings Laboratory – 1) presence of CA-125 tumor marker (occurs in 85% of patients, but very controversial when used as a screening test because other conditions cause increased levels) 2) increased se... Inside Surgery blogs http://www.medworm.com/rss/comments.php?id=3266858 Fri, 12 Feb 2010 03:46:51 +0100 3266858 http://www.medworm.com/index.php?rid=3224805&cid=t_240560_83_f&fid=34856&url=http%3A%2F%2Finsidesurgery.com%2F2010%2F01%2Fcreutzfeldtjakob-disease%2F Pathophysiology 1) degenerative disease of CNS caused by presence of infectious protein called a prion 2) presents with myoclonus and dementia; relentlessly progresses to death, usually within 1 year 3) in the past decade new-variant CJD has been described that is a human infection by the etiologic agent causing bovine spongiform encephalopathy (”mad cow” disease) Signs and Symptoms 1) in one third of cases a prodrome of malaise, fatigue, sleep problems, headache, and weight loss occurs 2) myoclonus 3) dementia 4) choreoathetoid movements 5) vision deficits Characteristic Test Findings EEG – 1) early in disease can be normal or show only scattered theta activity 2) as disease progresses episodic triphasic and polyphasic spikes are seen Histology/Gross Pathology 1) affecte... Inside Surgery blogs http://www.medworm.com/rss/comments.php?id=3224805 Sat, 30 Jan 2010 20:39:48 +0100 3224805 http://www.medworm.com/index.php?rid=3059824&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FVc-gpv7GNJs%2Fspecial-parts-of-you.html Dear Gracie, It is so easy to get wrapped up in daily life, and not realize how much you are growing and changing. You are no longer a little girl. You are a big girl, plain and simple. But you are... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=3059824 Sat, 05 Dec 2009 14:47:00 +0100 3059824 http://www.medworm.com/index.php?rid=2927466&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FVxSEOaG_4fc%2Falpha-1-antitrypsin-deficiency-and-flu.html Grace has come down with the flu, just which virus it is...I don't know. I'm betting that many parents of children with Alpha-1 have questions about how to treat their children when they have... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2927466 Mon, 26 Oct 2009 02:56:00 +0100 2927466 http://www.medworm.com/index.php?rid=2868674&cid=t_240560_77_f&fid=37259&url=http%3A%2F%2Fwww.horizonpress.com%2Fblogger%2F2009%2F10%2Frnai-gene-therapy-to-control-hepatitis.html Hepatitis C virus (HCV) is a leading cause of chronic hepatitis and its sequels, end-stage liver disease and hepatocellular carcinoma, are the most common indications for liver transplantation. The current standard treatment, pegylated-interferon-alpha in combination with ribavirin, represents a milestone in therapy, but only eradicates the virus in half of the patients, leaving tens of millions without hope for a cure. Therefore, it is urgent to explore novel and more effective therapeutic options. Such advancements could be derived from a better understanding of HCV biology. Progress in this area has accelerated with the application of RNA interference (RNAi) as a discovery tool to investigate viral and host cell factors involved in viral infection. Furthermore, RNAi has high potential a... Microbiology Blog: The weblog for microbiologists. blogs http://www.medworm.com/rss/comments.php?id=2868674 Wed, 07 Oct 2009 15:30:00 +0100 2868674 http://www.medworm.com/index.php?rid=2593193&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FlpZYdvdjayk%2Fsurprising-results.html My hopes were not high Past experience taught me You have trouble With blood tests Once you tried to bite Another you bounced Off all four walls Others we restrained you Many tantrums erupted Even... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2593193 Sun, 12 Jul 2009 03:12:00 +0100 2593193 http://www.medworm.com/index.php?rid=2584410&cid=t_240560_151_f&fid=36896&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FSuboxoneTalkZone%2F%7E3%2FIU-lNRW3NrE%2F For those of you who like to do some scientific reading, a recent meta-analysis looked at clonidine’s efficacy in reducing the symptoms of opiate withdrawal.  A meta-analysis, by the way, is when someone takes a number of studies that sometimes didn’t reach significant conclusions and combines the numbers, creating a larger study group that sometimes shows significant results that were missed in the smaller study.  There are limitations to such an approach, but it is still a common approach to looking at infrequent things.    The infamous ‘black box warnings’ on SSRIs about suicidal ideation in children came from meta-analysis of old studies of antidepressants. Alpha2-adrenergic agonists for the management of opioid withdrawal SuboxDoc ... Suboxone Talk Zone blogs http://www.medworm.com/rss/comments.php?id=2584410 Wed, 08 Jul 2009 18:31:16 +0100 2584410 http://www.medworm.com/index.php?rid=2570990&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FI-OrMDe0WnM%2Ffireworks-moment.html As I sorted through the mound of "paper nightmare" which had been stowed away in a drawer, I tossed various papers into the recycling bin. My finger stumbled upon a crumpled post-it note, upon which... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2570990 Sat, 04 Jul 2009 04:27:00 +0100 2570990 http://www.medworm.com/index.php?rid=2741100&cid=t_240560_139_f&fid=38879&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FVirologyBlog%2F%7E3%2FuSf-IPhJQ3M%2F During the earliest stages of a virus infection, cytokines are produced when innate immune defenses are activated. The rapid release of cytokines at the site of infection initiates new responses with far-reaching consequences that include inflammation. One of the earliest cytokines produced is tumor necrosis factor alpha (TNF-α), which is synthesized by activated monocytes and macrophages. This cytokine changes nearby capillaries so that circulating white blood cells can be easily brought to the site of infection. TNF-α can also bind to receptors on infected cells and induce an antiviral response. Within seconds, a series of signals is initiated that leads to cell death, an attempt to prevent the spread of infection. Inflammation is a very prominent response to TNF-α. There are four typ... virology blog blogs http://www.medworm.com/rss/comments.php?id=2741100 Wed, 01 Jul 2009 13:51:50 +0100 2741100 http://www.medworm.com/index.php?rid=2470008&cid=t_240560_155_f&fid=38406&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FThe1xObjective%2F%7E3%2FsG0d0nvlwh8%2F MedGadget has posted an article about WolframAlpha the next big “outside-the-box” stab at a search engine.  I have to agree, however, that Mr. Wolfram (btw, when was the last time you... Catch the rest of the story after the break... (Source: The 1x Objective) The 1x Objective blogs http://www.medworm.com/rss/comments.php?id=2470008 Wed, 10 Jun 2009 01:56:27 +0100 2470008 http://www.medworm.com/index.php?rid=2452954&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeedproxy.google.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2FLHXgcxaW6E4%2Falpha-1-antitrypsin-education.html Here I am in San Francisco. My girls are at home with Daddy, and I’m here to attend an Alpha-1 education conference. I’m here to learn more about Alpha-1. I’m here to meet up with my online family... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2452954 Thu, 04 Jun 2009 22:52:00 +0100 2452954 http://www.medworm.com/index.php?rid=2415610&cid=t_240560_131_f&fid=35743&url=http%3A%2F%2Fthegenesherpa.blogspot.com%2F2009%2F05%2Fwolfram-alpha-destroys-23andm-strategic.html One of the good things that I thought existed with 23andMe is that they have a nice agnostic platform which aggregates information on certain SNPs, similar but not the same as SNPedia........Let's face it, any knuckle head can do the social networking. But the hard work was the data aggregation......Either way, what I like about SNPedia and Prometheus is it is sort of free......You do have to dump some data into it......As opposed to paying 399 USD to have access to it and your Million SNPs.But now I have seen the death of these sorts of company models......Really? How?Something called Wolfram Alpha....You can watch it being brought on line Today Friday the 15thYou can watch the screencast into as well....Very simple, semantic web stuff.But what is amazing is the possibility of "Wolframmin... Gene Sherpas: Personalized Medicine and You blogs http://www.medworm.com/rss/comments.php?id=2415610 Fri, 15 May 2009 12:31:00 +0100 2415610 http://www.medworm.com/index.php?rid=2405870&cid=t_240560_133_f&fid=35129&url=http%3A%2F%2Fwhitterer-autism.blogspot.com%2F2009%2F05%2Fold-dogs-and-new-tricks.html There are some lovely people around my neighbourhood and this particular bunch refer to themselves as 'crafters.' The term 'crafter,' is I believe, peculiar to America, as elsewhere, such people just have 'hobbies.' There are all sorts of subtleties that pass way over my head, as I prefer to remain close to the ground like the low life that I truly am. That said they're a jolly and generous crowd, who welcome newcomers with interest and warmth.As we age we become wise, or at least that is the theory. Personally I find that as I grow older, I become increasingly scatty, forgetful and what my son refers to as ‘random.’ I am prone to stereotype people, it's shorthand. It's one of my many faults but old dogs, mongrels, can still learn new things.I find that I have learned new things and be... Whitterer on Autism blogs http://www.medworm.com/rss/comments.php?id=2405870 Mon, 11 May 2009 06:59:00 +0100 2405870 http://www.medworm.com/index.php?rid=2295073&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2009%2F03%2Falpha-1-antitrypsin-deficiency-get.html It’s a familiar story for many Alphas. You’ve been short of breath. The cough you got from that chest cold two weeks ago won’t go away. Your doctor prescribes an inhaler for asthma, but it’s not helping much. You’re confused, tired and worried about what may be wrong. The Alpha-1 Foundation's new video, “Short of Breath? Get Tested,” focuses on the symptoms of Alpha-1 and the problems Alphas face getting the right diagnosis. You can help spread awareness about getting tested for Alpha-1 by sharing this video with your friends. (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2295073 Thu, 12 Mar 2009 02:42:00 +0100 2295073 http://www.medworm.com/index.php?rid=2149742&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F528682088%2Fmy-worlds-collide.html What do you get when you cross an Alpha-1 MZ gene carrier/hypertensive momma with a developing baby who has ZZ Alpha-1? ANSWER: SEVERE PREECLAMPSIA Some amazing research is going on at Yale by Dr.... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2149742 Sun, 01 Feb 2009 06:38:00 +0100 2149742 http://www.medworm.com/index.php?rid=2067890&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F495879784%2Ftelevision-show-featuring-alpha-1.html Healthy Body, Healthy Mind (HBHM) takes a look at Alpha-1 Antitrypsin Deficiency and helps viewers to understand Alpha-1. The show is currently running on the Public Television Network, so contact... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=2067890 Fri, 26 Dec 2008 22:23:00 +0100 2067890 http://www.medworm.com/index.php?rid=2018351&cid=t_240560_136_f&fid=36162&url=http%3A%2F%2Fmyelomablog.com%2F2008%2F12%2F05%2Falpha-inventions%2F A programmer named Cheru Jackson spent a few months coding his experiment to bring bloggers together.  I can’t explain why this has happened, but I noticed a few days ago that my blog started getting referrals from Alpha Inventions.  I was curious, so I went to look at it.  This young man has created a blog brower, which allows his site visitors to look at post after post from various blogs.  If you see something that interests you, you can click on it to read more.  What I think is happening is that people are becoming somewhat addicted to it.  Within a few minutes, about thirty extra people had visited my blog from there. Jackson’s own blog is here. (Source: beth's myeloma blog) beth's myeloma blog blogs http://www.medworm.com/rss/comments.php?id=2018351 Sat, 06 Dec 2008 01:44:40 +0100 2018351 http://www.medworm.com/index.php?rid=1964292&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F452598438%2Fjust-when-i-think-she-understands.html Just when I think Gracie understands about Alpha-1, she blind sides me with her youth and immaturity. All of her misunderstanding is completely age appropriate, but leaves me feeling a bit unsettled.... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1964292 Fri, 14 Nov 2008 04:29:00 +0100 1964292 http://www.medworm.com/index.php?rid=1918179&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F435179824%2Fgetting-word-out.html About Alpha-1, that is... I'm over at 5 Minutes for Special Needs today: http://www.5minutesforspecialneeds.com/553/but-were-not-like-that-mom/ Come on over and check out this one of a kind... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1918179 Tue, 28 Oct 2008 22:16:00 +0100 1918179 http://www.medworm.com/index.php?rid=1837466&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F405905702%2Fwhy-i-support-newborn-screening-for.html I'll never forget the moments when Grace's pediatric gastroenterologist sat Charlie and I down in some rocking chairs in the NICU and said some words I couldn't quite comprehend. She had diagnosed... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1837466 Mon, 29 Sep 2008 03:44:00 +0100 1837466 http://www.medworm.com/index.php?rid=1826143&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F401286207%2Ffly-with-angles.html There are not adequate words to say the Earth lost a precious little human being named Gavin. May you rest in peace, and may your family find solace. [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1826143 Wed, 24 Sep 2008 00:05:00 +0100 1826143 http://www.medworm.com/index.php?rid=1811480&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F397796343%2Fnewborn-screening-for-alpha-1.html The Newborn Screening Workshop is completed. I'm home now from Arlington, and well, I'm jumping for joy. DRUM ROLL PLEASE!!!!! Okay, since I don't have a drum roll audio file, how about some... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1811480 Sat, 20 Sep 2008 02:58:00 +0100 1811480 http://www.medworm.com/index.php?rid=1811481&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F397137523%2Ffix-you.html I'm feeling a bit panicked about Gavin, and thought I'd send these lyrics to him since his Mom has this song on his blog. Please pray or send positive thoughts for him. He really needs them. Fix You... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1811481 Fri, 19 Sep 2008 02:53:00 +0100 1811481 http://www.medworm.com/index.php?rid=1809923&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F396849200%2Flive-from-arlington-va.html I'm live from Arlington, VA at the Alpha-1 Foundation's Critical Issues Workshop: The Promise and Challenge of GINA: Is it time for Newborn Screening for Alpha-1? I was honored to have been invited... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1809923 Fri, 19 Sep 2008 02:53:00 +0100 1809923 http://www.medworm.com/index.php?rid=1806471&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F394876039%2Fgavin-in-picu.html A few weeks ago, I mentioned that Gavin had been passed over with his gift of life. Well, it happened a 2nd and 3rd time. Now, he has been moved to the PICU, and honestly, it appears he needs many... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1806471 Wed, 17 Sep 2008 05:04:00 +0100 1806471 http://www.medworm.com/index.php?rid=1750374&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F379695709%2Ffinding-courage-through-sharing.html This month, Childlife, has a new topic for the Finding Courage Through Sharing blog carnival. The topic for this month is memories and memory markers. Share about something that trips a memory in... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1750374 Sun, 31 Aug 2008 14:33:00 +0100 1750374 http://www.medworm.com/index.php?rid=1729637&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F373169630%2Ftesting-newborns-for-alpha-1.html I've been asked to provide a patient's perspective at an Alpha-1 Foundation Critical Issues Workshop in September regarding newborn screening for Alpha-1. I'm a little nervous about this, but... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1729637 Sun, 24 Aug 2008 03:25:00 +0100 1729637 http://www.medworm.com/index.php?rid=1711839&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F367322114%2Ffalse-alarm-for-gavin.html Sad to say, but Gavin's transplant didn't happen. False alarms happen, but they are often an extreme let down for the family, who are desperate to save their loved one's life. Unfortunately, the... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1711839 Sun, 17 Aug 2008 15:18:00 +0100 1711839 http://www.medworm.com/index.php?rid=1709611&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F366971714%2Fgavin-gets-call.html I just learned that a little baby boy, named Gavin, has been called for a liver transplant due to his progressive liver disease from Alpha-1. Please consider sending positive thoughts or prayers to... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1709611 Sun, 17 Aug 2008 03:15:00 +0100 1709611 http://www.medworm.com/index.php?rid=1646325&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F342512526%2Fgrand-rounds-turns-200.html Some of you may be aware of a blog carnival called Grand Rounds. It is the weekly rotating carnival of the best of the medical blogosphere. On a lark, I submitted my post about Gracie's realizations... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1646325 Tue, 22 Jul 2008 12:35:00 +0100 1646325 http://www.medworm.com/index.php?rid=1639394&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F340272643%2Fgo-ali.html Ali's life has been so inspiring to me since I met her mom online in 2003. Enjoy this inspiring article about her life since liver transplant due to Alpha-1. A new outlook on life Transplant source... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1639394 Sun, 20 Jul 2008 00:57:00 +0100 1639394 http://www.medworm.com/index.php?rid=1635146&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F338677641%2Fbut-were-not-like-that-mom.html It has taken me a week to write this, and I'm not so sure I've quite captured last week's realization for Gracie or for me. It was difficult to recount the experience since my emotions pretty much... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1635146 Fri, 18 Jul 2008 02:35:00 +0100 1635146 http://www.medworm.com/index.php?rid=1553099&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F322209743%2Falright-then.html When my daughter Grace was born six weeks early and underweight, she was quickly placed in our hospital's neonatal intensive care unit (NICU). At that time, I was quite ill with the effects of severe... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1553099 Sat, 28 Jun 2008 18:00:00 +0100 1553099 http://www.medworm.com/index.php?rid=1543854&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F318508430%2Finhaleexhale.html Oxygen tubes were strewn across the top of their lips and clear tubing clutched in their hands. Occasionally, a hiss would erupt from an oxygen unit. Here and there, the pulse of oxygen being... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1543854 Mon, 23 Jun 2008 23:24:00 +0100 1543854 http://www.medworm.com/index.php?rid=1467054&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F297558863%2Four-cover-girlshaha.html Soon to be featured on the cover of The Alpha-1 News...introducing the Alpha Girls... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1467054 Sun, 25 May 2008 04:20:00 +0100 1467054 http://www.medworm.com/index.php?rid=1461172&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F295520623%2Falpha-1-foundation-association.html Alpha-1 Foundation, Association Celebrate GINA signing; Plans Under Way to Discuss Implications, Opportunities for Alpha-1 Detection MIAMI – The Alpha-1 Foundation and Alpha-1 Association today... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1461172 Thu, 22 May 2008 03:23:00 +0100 1461172 http://www.medworm.com/index.php?rid=1454749&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F294185665%2Fgenetic-information-nondiscrimination.html President Bush will sign the Genetic Information Nondiscrimination Act (GINA) into law tomorrow. One of my Alpha-1 pals, Dennis, who actively lobbied for this historic legislation will be in... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1454749 Tue, 20 May 2008 10:54:00 +0100 1454749 http://www.medworm.com/index.php?rid=1439988&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F289408459%2Fin-home-stretch.html The following article will appear in an upcoming issue of the Alpha-1 News. Please enjoy this advance copy. Alpha-1 Association copyrights apply. On two recent beautiful spring days, the "Ayes" went... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1439988 Tue, 13 May 2008 12:12:00 +0100 1439988 http://www.medworm.com/index.php?rid=1426548&cid=t_240560_136_f&fid=35300&url=http%3A%2F%2Fwww.metastaticlivercancer.org%2F2008-05-07-cancer-treatment%2F2-responses-to-metastatic-liver-cancer%2F Sandra and Glen left a comment on our April Metastatic Liver Cancer post, which we will add below in italics and our feedback in normal script. Glen’s Liver Cancer story Thank you for sharing your story. My mom, aged 71, has been diagnosed as having HHC (Hepatocellular Carcinoma) in April 08. Her MRI indicated multiple Metastasis in her liver (innumerable large and small tumors). Sounds like father’s diagnosis: lots of words we heard for the first time and when we saw the picture of his liver it became all clear to us: innumerable small tumors scattered in his liver… Her blood tests indicated elevated Alpha Fetoprotein, and her history of chronic Hepatitis added to the diagnosis of liver tumor. The liver tumor involves both lobes (which makes it not curable by resection,... Metastatic liver cancer blogs http://www.medworm.com/rss/comments.php?id=1426548 Wed, 07 May 2008 10:19:42 +0100 1426548 http://www.medworm.com/index.php?rid=1397716&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F277386538%2Fhistoric-day.html I'm amazed. I'm proud. I'm relieved. I'm wondering what the future holds. The Senate passed the Genetic Nondiscrimination Act (GINA) today. It has been years in the making, and it is finally here.... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1397716 Fri, 25 Apr 2008 04:28:00 +0100 1397716 http://www.medworm.com/index.php?rid=1397717&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F277348914%2Fim-finding-courage-through-sharing.html As an avid reader of blogs, I've discovered a gem of a writer in Michelle at In the Life of a Child. She began a blog carnival called Finding Courage Through Sharing. It is aimed at a large community... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1397717 Fri, 25 Apr 2008 02:58:00 +0100 1397717 http://www.medworm.com/index.php?rid=1358612&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F266730099%2Fboston-marathon-update.html In January, Grace and Meghan were matched with Jen Davis, a runner in the Boston Marathon, through a patient match program in use at the American Liver Foundation. Jen is participating in the Run for... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1358612 Wed, 09 Apr 2008 02:04:00 +0100 1358612 http://www.medworm.com/index.php?rid=1289142&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F248120453%2Fwhen-we-go-to-heaven.html How do you speak to your children about death? Really, how do you? Please comment. I find this subject extremely difficult, yet it has been unfortunately quite common place lately. I'm unprepared... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1289142 Sat, 08 Mar 2008 23:40:00 +0100 1289142 http://www.medworm.com/index.php?rid=1255096&cid=t_240560_131_f&fid=34976&url=http%3A%2F%2Ftalk.dnadirect.com%2F2008%2F02%2F25%2Fny-times-insurance-fears-and-dna-testing%2F Amy Harmon looks at the issue of privacy, fear of discrimination, and the very real repercussions some people are facing as a result of the tension between important medical information and lack of comprehensive legislation to protect patients' genetic privacy. She quotes Francis Collins, director of the National Human Genome Research Institute at the NIH, “It’s pretty clear that the public is afraid of taking advantage of genetic testing. If that continues, the future of medicine that we would all like to see happen stands the chance of being dead on arrival.” I don't think it's as dire as that, but all of us -- patients, physicians, industry and thought leaders -- need to push for systemic solutions. (Source: DNA Direct Talk) DNA Direct Talk blogs http://www.medworm.com/rss/comments.php?id=1255096 Mon, 25 Feb 2008 19:59:54 +0100 1255096 http://www.medworm.com/index.php?rid=1253299&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F240575506%2Fpulse.html As a parent, I often feel like I've got the "pulse" of each of my children pretty much down to an exact science. Gracie is my serious, often tentative child. She is genuinely concerned about a lot... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1253299 Sun, 24 Feb 2008 22:44:00 +0100 1253299 http://www.medworm.com/index.php?rid=1243512&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Ffeeds.feedburner.com%2F%7Er%2FUniqueButNotAlone%2F%7E3%2F237968883%2Fpay-it-forward.html I'll never forget the moments when Grace's pediatric gastroenterologist sat Charlie and I down in some rocking chairs in the NICU and said some words I couldn't quite comprehend. She had diagnosed... [[ This is a content summary only. Visit my website for full links, other content, and more! ]] (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1243512 Wed, 20 Feb 2008 03:25:00 +0100 1243512 http://www.medworm.com/index.php?rid=1226816&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2008%2F02%2Fmystery-diagnosis-alpha-1-len-geiger.html When I went to the national Alpha-1 conference a few years ago, I sat down next to a very clean cut looking man. He introduced himself as Len, and he immediately asked me my story and how I came into the Alpha-1 community. He shared his story with me too, and like most of the stories I've heard from Alphas, his touched my heart. Please enjoy these videos of Len, who appeared on the television show, Mystery Diagnosis. Kudos to Len for getting the word out about Alpha-1!Click on each video to watch Len's story. Part 1 is 7 minutes, 15 seconds, and part 2 is 8 minutes, 16 seconds. (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1226816 Wed, 13 Feb 2008 02:19:00 +0100 1226816 http://www.medworm.com/index.php?rid=1198751&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2008%2F02%2Fmommys-answers-to-lifes-questions.html Or rather, my crude attempt at answering the questions of a three and 1/2 year old. LOLTonight, as I was putting the girls to bed, we had quite a profound conversation, which taught me a little more about my daughters and their innate abilty to understand their surroundings, others in their life, and others' belief systems. While we have taught our children a specific belief system, I applaud and welcome learning about other belief systems. It helps the girls to see the larger world, while also encouraging them to accept diversity. Growing up with Alpha-1 Antitrypsin Deficiency will already provide the girls with a different life vantage. I hope to cultivate diplomacy and understanding in them as well. I don't have a set plan for sharing information with them. Rather I try to use simple, e... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1198751 Mon, 04 Feb 2008 02:39:00 +0100 1198751 http://www.medworm.com/index.php?rid=1187227&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2008%2F01%2Fboston-marathon-alf-run-for-research.html I feel so blessed and honored that Gracie and Meghan have been matched again with Jen Davis, a runner in the Boston Marathon. Jen will train and run in the marathon while wearing Grace & Meghan's names on her back.Last year, the American Liver Foundation raised over 1.2 million dollars in the Run for Research. I'm just so excited and honored that she is running for my girls. It makes me feel so good to know that an almost stranger can care so much, and do so much good for herself and others.Jen, we will be cheering for you on April 21st. Thank you so much for your dedication to raising money for liver research. We appreciate it more than you'll ever know.Please consider contributing to Jen's goal of raising funds for research, here is her online donation page: http://www.active.com/donate/... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1187227 Wed, 30 Jan 2008 02:22:00 +0100 1187227 http://www.medworm.com/index.php?rid=1179299&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2008%2F01%2Flongitudinal-study-of-alpha-1.html WOOHOO!Today, I was notified that the Cholestatic Liver Disease Research Consortium (CLiC) has begun the longitudinal study of the causes of intrahepatic cholestasis. Last fall, I interviewed the chief investigator, Dr. Ron Sokol, who explained how the study works. See this post to read that article.As much as I'm excited and will be enrolling my daughters in this study, I'm equally upset that it will require me to add yet another set of tests for both Grace & Meghan. They are easily traumatized by blood tests, and while this research may help them down the road, it means that they must sacrifice some of their DNA. This is the part of their Alpha-1 that I don't like. Making them participate in research gives me some pause, but I know that this study is being conducted to try to figure out ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1179299 Sat, 26 Jan 2008 04:48:00 +0100 1179299 http://www.medworm.com/index.php?rid=1162652&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2008%2F01%2Fnsaids-and-alpha-1-antitrypsin.html Hmmm! I guess the children's ibuprofen in use at my house should be discontinued. Interesting, and I'm amazed this isn't more well known within the Alpha-1 community. Obviously, this hasn't been tested on humans, but animal models are really quite interesting and can show causal relationships.Non-Steroidal Anti-Inflammatory Drug Increases Liver Damage In Mice Carrying Mutant Human GeneAlpha-1-antitrypsin deficiency isn't a term that rolls right off the tongue. But people diagnosed with this genetic disorder learn its potential effects well. They know they shouldn't smoke or be around smokers because they are at increased risk for developing emphysema at a young age. In addition, some patients with alpha-1-antitrypsin (AT) deficiency can develop serious liver disease. But predicting which o... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1162652 Sat, 19 Jan 2008 20:23:00 +0100 1162652 http://www.medworm.com/index.php?rid=1150892&cid=t_240560_136_f&fid=36051&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FCancerCommentary%2F%7E3%2F216892947%2F Approved by the FDA, a genetic test that can help in the assessment of risk of tumor recurrence and long-term survival for patients with relatively high-risk breast cancer - TOP2A FISH pharmDx - is the first approved device to test for the TOP2A (topoisomerase 2 alpha) gene in cancer patients. The TOP2A gene plays a role in DNA replication. The TOP2A FISH pharmDx test uses fluorescently labeled DNA probes to detect or confirm gene or chromosome abnormalities, a technology known as fluorescent in situ hybridization (FISH). The recurrence of cancer depends partly on certain genes whose activity may be altered by changes in the number of gene copies in the tumor. Changes in the TOP2A gene in breast cancer cells mean there is an increased likelihood that the tumor will recur or that long-term ... Cancer Commentary blogs http://www.medworm.com/rss/comments.php?id=1150892 Tue, 15 Jan 2008 07:43:00 +0100 1150892 http://www.medworm.com/index.php?rid=1120856&cid=t_240560_111_f&fid=36048&url=http%3A%2F%2Ffeeds.b5media.com%2F%7Er%2Fb5media%2FAHeartyLife%2F%7E3%2F207805933%2F Test question… True or False? There is a no difference between diabetic and non diabetic hearts in how they burn energy. Hmm, I am going to bet that at least half of you got this answer correct. If you answered false, you are a big winner! Diabetic hearts rely almost exclusively on fats for energy while a “normal” heart relies on fats and sugars for food. Let me break it down for you. Both PPAR-alpha and PPAR-beta/delta are proteins that are found in heart tissue. In the diabetic heart, enhanced activity of PPAR-alpha drives the use of fats as fuel, but the role of PPAR-beta/delta has been unknown, which is unfortunate being that this protein increases cardiac function. In the mice that were engineered to mimic a diabetic heart, increased PRAR-alpha, there was increased f... A Hearty Life blogs http://www.medworm.com/rss/comments.php?id=1120856 Sat, 29 Dec 2007 01:04:04 +0100 1120856 http://www.medworm.com/index.php?rid=1117840&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F12%2Fcough-cough-cough.html As I write this, Meghan is gleefully playing inside our brand new, Santa delivered Disney Princess play hut tent. As she does every day, Meghan is humming her way through her imaginary world of the kitty vets office. Her newest family pet is a Fur Real Friend orange and white kitty. Grace's kitty is also visiting the vets office.While I'm thoroughly enjoying the sounds of the girls playing together even if there is the occasional whining and whimpering, I don't like one sound I'm hearing over and over again. It is the sound of Meghan's cough, which resembles the sound that a curdled jug of milk might make if you shook it. The "chunk, chunk, chunk, gag, gag, gag" sounds are driving this Alpha mom a little bit crazy. Once again, I'm standing here wondering how much damage Meghan's former mic... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1117840 Wed, 26 Dec 2007 16:48:00 +0100 1117840 http://www.medworm.com/index.php?rid=1106329&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F12%2Fcherished.html I'm feeling sentimental as the year winds down to an end. I'm grateful for all of my blessings, and this letter I wrote to Meghan when she was 1 year old really and truly recaps how I'm feeling, which is incredibly blessed. Some of you may have seen this already, but it bears repeating. I hope Meghan cherishes it when she is older.Dear Meghan,When your sister was about 15 months old I was having so much fun being a mommy, I began to have what we, mommies, call baby lust. Your big sister, Gracie, was at a very fun age filled with exploration and inquisitiveness, but she had Alpha-1.Your daddy and I eventually decided to add to our family, but that was not without reservations. We discussed having another baby from a risk benefit perspective. After all, I had a high risk pregnancy and birth ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1106329 Wed, 19 Dec 2007 22:45:00 +0100 1106329 http://www.medworm.com/index.php?rid=1096737&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F12%2Fcroup.html Thursday morning, I awoke to the sound of Grace coughing like a barking seal. It wasn't too bad at first sounds, but then rapidly progressed into a series of "arf, arf, arrrrf, arrrrrrrrrrffffff, aaaaaaaaaarrrrrrrrrrfffffffffff" followed by a garbled, "Mommy!"I walked into her room, and she promptly began to bark again. "Hmmm, that doesn't sound good," I thought. As I got closer to her sitting up in bed, I heard what sounded like Darth Vadar breathing, which can be properly labeled as stridor."Ah crap!" I thought. I knew that croup is irritation in the upper airway, but wasn't sure what that meant in terms of her Alpha-1. Would this virus be damaging her lungs? Or, could this be something more severe like bronchitis? In either case, it was time to get an appointment with the pediatrician. ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1096737 Sat, 15 Dec 2007 07:09:00 +0100 1096737 http://www.medworm.com/index.php?rid=1033071&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F11%2Froad-to-cure.html This study isn’t the final answer though. We think this an important step on the way to finding the final answer, and especially for developing a kind of a flow chart for how the liver gets hurt. That allows researchers to investigate every arrow in the chart, and figure out a medicine that could block certain “arrows” in the chart.”Dr. Teckman envisions this for the future, “Now we are trying to understand the liver cells that have the large amount of Z protein build-up. We are trying to determine what that build-up might mean in terms of developing liver cancer. We are also trying to test drugs that would block the build up of abnormal protein so we can hopefully take some of these drugs we are testing in animals and then try them in humans in clinical trials.”The research so... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1033071 Fri, 16 Nov 2007 22:53:00 +0100 1033071 http://www.medworm.com/index.php?rid=1031202&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F11%2Flife-insurance.html Neither of my children can obtain life insurance. Well what I mean is that I have not been able to obtain life insurance on my children. They've been flat out denied because of their Alpha-1 Antitrypsin Deficiency.I know that this can be a morbid subject for some people, but I've faced the idea that my children's lives are not guaranteed. Yes, I hate to even write that down. If I lost my children, I'm pretty sure I'd curl up in a ball somewhere and never emerge again. My only hope for life insurance policies for my girls would be to pay for funeral expenses. Money could never ever replace them or begin to soothe the emptiness I'd feel.It has always bothered me that Gracie and Meghan won't be able to take advantage of the benefits of life insurance, though. I've even asked insurance agents ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1031202 Fri, 16 Nov 2007 03:25:00 +0100 1031202 http://www.medworm.com/index.php?rid=1028284&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F11%2Finterview-with-alpha-1-expert.html On Friday, I had the opportunity to interview a man helping to find answers for how Alpha-1 damages the liver. He is Dr. Jeff Teckman, and I've gotten to know him as an acquaintance through my volunteer work with the Alpha-1 Association and Alpha-1 Foundation. It was an enlightening experience in that I got to better understand how the true process of research happens, but then I had a realization.Research takes years and years of trial and error. Successes are often fleeting or just out of reach. In talking to Dr. Teckman, I learned about in vitro research, which is based on cells grown in a petry dish. I also learned about in vivo research, which uses animals or humans. His latest publication was based on a well known assumption that the build-up of the Alpha-1 Z protein in the liver cel... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=1028284 Thu, 15 Nov 2007 02:50:00 +0100 1028284 http://www.medworm.com/index.php?rid=974654&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F10%2Fowie-it-hurts.html When Gracie was a baby in the NICU, she had several leads on her chest to monitor various vital signs and such. I remember the circular stickers that attached the leads to Grace covered nearly all of her chest. I have a vivid memory of watching her tiny 3 pound body breathe in and out. Her retractions made me very nervous. I kept willing her to calm the rapidity of her breaths. My telepathic notions didn't work, but some time and patience did.Preemie skin is often frail, and the NICU used something they called "second skin" to help protect Grace's skin from sores while in their care. Grace only ended up with one tiny scar on her collar bone. It is pea-sized and slightly raised. Recently, Grace asked me what the bump was on her chest. I told her how it got there, and she said, "I like to to... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=974654 Wed, 24 Oct 2007 03:08:00 +0100 974654 http://www.medworm.com/index.php?rid=964738&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F10%2Falpha-1-carriers-and-anxietybipolar.html Wow, I guess I would have never put these two together. Interesting, but I'm not sure I completely understand it...Art, alpha-1-antitrypsin polymorphisms and intense creative energy: Blessing or curse? NeuroToxicology Volume 28, Issue 5, September 2007, Pages 899-914 Twenty-Third International Neurotoxicology Conference: ”Neurotoxicity in Development and Aging” Donald Everett Schmechel, Department of Medicine, Duke University Medical Center, Medical Director, The Falls Neurology and Memory Center, 4355 Hickory Boulevard (US 321), Granite Falls, NC 28630, United States Received 1 February 2007; accepted 21 May 2007. AbstractPersons heterozygous for Z, S and rare alpha-1-antitrypsin (AAT, SERPIN1A) polymorphisms (ca. 9% of population) are often considered ‘silent’ carriers with incre... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=964738 Fri, 19 Oct 2007 22:01:00 +0100 964738 http://www.medworm.com/index.php?rid=939920&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F10%2Fresearch-into-impact-of-testing.html The objective of this study is to investigate the ethical, legal, and social impact of testing at risk children for Alpha-1. The results will inform the development of recommendations for health care professionals on what constitutes disclosure of risks and benefits in informed consent or assent by children who are considering testing for Alpha-1. As a pre-study, we will conduct 2 focus groups: one in Denver, Colorado on November 10, 2007 and one in Orlando, Florida on December 1, 2007. To participate in a focus group, you must be a parent who has made a decision to test or not to test your at risk child for Alpha-1 or an adult who was tested for Alpha-1 as a child. To enroll in the focus group or for more information please email marilyn.coors@uchsc.edu or call 1-303-315-0203. To particip... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=939920 Wed, 10 Oct 2007 03:27:00 +0100 939920 http://www.medworm.com/index.php?rid=912155&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F09%2Fbeautiful-alpha-1-organ-donation-story.html This is an amazingly beautiful story of a woman, just about 1 year younger than me, who received a liver transplant due to ZZ Alpha-1 in 1984. She lost her older brother to Alpha-1, but her story is so beautiful. Enjoy the reminder of life's blessings.http://www.azcentral.com/arizonarepublic/news/articles/0923transplant0923.html (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=912155 Fri, 28 Sep 2007 20:13:00 +0100 912155 http://www.medworm.com/index.php?rid=868298&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F09%2Fbut-i-want-to-cut-grass-when-i-grow-up.html Grace's understanding of Alpha-1 is exploding now. Her naiveness is fading, and we'll she is one smart cookie. I hope that I can help her believe that she is special because she is an Alpha, but that it doesn't limit her (within reason). This is the hard part of parenting a child with a medical condition...explaining things with kid logic and just enough without giving too much. It certainly is a balancing act. Here is another example of our conversations lately.While driving down our alley in the minivan, Grace noticed our neighbor cutting his lawn."Look Mom! Emma's Daddy is cuttin' the grass. Mom, when can we make the Alpha go away?""Honey, we can't make it go away. It isn't like a germ. It is part of who you are, but we are taking good care of you by protecting your lungs from bad stuff... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=868298 Thu, 13 Sep 2007 04:09:00 +0100 868298 http://www.medworm.com/index.php?rid=862183&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F09%2Fdisenchanted.html As I approached the front door of the home, I paused and composed myself. I guessed that I'd have a hard time getting through the meeting. After all, I had decided I needed to tell them I could no longer serve.I gulped some air, and entered. I walked in the house behind another woman. The individuals in the living room quieted. A few minutes later, we gathered around a large oak table for the meeting. Several agenda items were to be completed. All that I wanted was for the last item to arrive. I wanted to say what I had to say, and get out of there. With much anticipation, I shifted in my chair and managed to gulp down some food. My nerves were on end, and I'm pretty sure my blood pressure was rising.Eventually and finally, we arrived at the agenda item I anticipated. I informed the group ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=862183 Tue, 11 Sep 2007 02:37:00 +0100 862183 http://www.medworm.com/index.php?rid=853189&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F09%2Fanother-cousin-gone.html Gosh, I'm pretty depressed since I recently found out my cousin, Butch, passed away on June 27th at age 44. I'm assuming his Alpha-1 liver disease is what finally released his soul. How is it that we just found out you're gone???I hadn't seen him in many years, but it just feels strange knowing he is gone. As a little girl, I remember him hanging out with my uncle David and Butch's older brother, Tony. They would have been teenagers at the time, and they seemed so old to me then. But now I think that Butch was simply too young to die. There are too many Alpha angels in heaven. It just makes me so so sad to know he is gone. How is it that your brother, Tony, is the only one left of your siblings now? How is it that 4/5 siblings are gone from Alpha-1? Sometimes, I wonder...Butch, I know you ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=853189 Sun, 09 Sep 2007 04:51:00 +0100 853189 http://www.medworm.com/index.php?rid=838871&cid=t_240560_133_f&fid=35129&url=http%3A%2F%2Fwhitterer-autism.blogspot.com%2F2007%2F09%2Fthat-darned-cat-in-hat.html “Can can, can you do the can can, if you can then I can,” he sings as he spins, interspersed with Pokemon noises, a surreal combination at the best of times. I find it more difficult than usual to concentrate. Whilst I have long been a fan of dear Ludwig, this modern version can be intensely annoying after a few hours. I hope that this "perseveration" will make him oblivious, as we have company. The play date victim is a sweet natured, tolerant, typically developing girl. The girls play. The boys spin. This faultless visitor has one minor idiosyncrasy that is of minute concern. Every sentence she utters is accompanied by the phrase ‘Ohmygod.’ I know that it is the verbal equivalent of ‘er,’ ‘um’ or ‘actually,’ but it is disconcerting for elderly foreigners who are set ... Whitterer on Autism blogs http://www.medworm.com/rss/comments.php?id=838871 Mon, 03 Sep 2007 16:10:00 +0100 838871 http://www.medworm.com/index.php?rid=831066&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F08%2Fode-to-clean-air.html Well, I'm just jokin' about the ode part...Charlie and I just got back from sin city, aka Las Vegas. We attended our dear friend Shanna's wedding to Steve. It was 107 that day, and well, I've never worn sun screen to a wedding before. :)In any case, it was fun to get some one-on-one time with my husband. It was down right decadent at times what with us being able to lie down on the bed, and lazily flip channels without a child whining something to the effect of "I wanna watch Dora!" I missed the girls, and they were frequently our topic of conversation.What I didn't like about Las Vegas was the amount of cigarette and cigar smoke I encountered on what seemed to happen in 30-second intervals. Blech! Now that I've been educated about how exposure to one cigarette completely wipes out the ava... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=831066 Thu, 30 Aug 2007 03:26:00 +0100 831066 http://www.medworm.com/index.php?rid=816757&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F08%2Falpha-realization.html As I was tucking Meghan into bed tonight, I told her that she would be going to the eye doctor tomorrow."Why'm goin' ta the eye docta Momma?" Meghan inquired."To get your eyes checked out Meggie so that they stay healthy. Sometimes, kids who were born too early need to get glasses like the ones I'm wearing Meggie. Daddy will take you to see if your eyes need glasses."Meghan responded, "Okay, Mommy."Grace joined in, "Mommy were you born too early?""No honey, I wasn't born too early. I was born one week late.""Did your mommy get sick when you were in her tummy?""No honey, but my mommy's mommy got sick from those nasty "party bugs" called preeclampsia like me."Mom, when can we make the Alpha go away?" Grace pondered.Ah ha, there it is again. Gracie is growing up so quickly now, and her self-r... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=816757 Wed, 22 Aug 2007 04:08:00 +0100 816757 http://www.medworm.com/index.php?rid=779019&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F08%2Fvisit-to-gi-clinic.html We reported that Grace has bloody noses here and there, but has always been a kid who bruises easily. So, Dr B. ordered a clotting time study, which just meant an extra couple of tubes of blood. All of this went right over Grace's head so she is none the wiser. Whew!I'm pretty confident that each of my girls will have mild elevations in ALT/AST, and Grace's clotting time will come out normal as it did when the test was run when she was 2. Okay. I should probably say that I'm crossing my fingers for those results.As you can see, I struggle with denial versus reality versus maintaining a normal childhood experience for my girls. Both of them identify themselves as Alphas, but I still don't think they quite "get" what Alpha-1 is yet. I wonder how much longer I can help maintain that blissful ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=779019 Sat, 04 Aug 2007 03:29:00 +0100 779019 http://www.medworm.com/index.php?rid=776208&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F08%2Freality-setting-in.html Tomorrow, my girls go for their liver checks at the GI clinic. Why does it always send me into an inner panic mode? Well, I can answer that question, but I guess this just an Alpha mom voicing her inner most fears. Please God, please let everything be fine.Oh and God, please help Gracie with her anxiety over blood draws. Last time, she tried to bite the lab tech, and well, we need some bravery Lord. Please?A humble Alpha mom,Jen (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=776208 Fri, 03 Aug 2007 03:44:00 +0100 776208 http://www.medworm.com/index.php?rid=774224&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F08%2Ftalecris-sues-baxter.html The Delware IP Law Blog is reporting "Baxter Loses Bid To Have Patent Declared Invalid for Indefiniteness."http://www.delawareiplaw.com/index.php?itemid=149Augmentation therapy is big pharmaceutical business in the Alpha-1 community. I suppose this goes on more than most of us know. As a parent of Alphas, I hope this kind of drama stays far, far away from my girls as they get older. (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=774224 Thu, 02 Aug 2007 03:42:00 +0100 774224 http://www.medworm.com/index.php?rid=767679&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F07%2Ftalecris-goes-for-initial-public.html Hey Alpha-1 Community!Hold onto to your hats. The producer of Prolastin, an augmentation therapy for Alpha-1 lung disease, is going public. Hot of the presses...Talecris Biotherapeutics (TLCR) Files $1 Billion IPO07-30-2007 09:06:31 AM Talecris Biotherapeutics Holdings (Nasdaq: TLCR) has filed a registration statement with the SEC for an initial public offering of its common stock. The Company intends to apply to list its common units on the Nasdaq under the symbol “TLCR.” The proposed maximum aggregate offering price is $1 billion.The offering is being made through Morgan Stanley, Goldman, Sachs & Co. and JPMorgan.Talecris Biotherapeutics is a biopharmaceutical company that is one of the largest producers and marketers of plasma-derived protein therapies in the world. Talecris develop... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=767679 Mon, 30 Jul 2007 23:48:00 +0100 767679 http://www.medworm.com/index.php?rid=764443&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F07%2Falpha-1-antitrypsin-deficiency-human.html I found a really great summation of Alpha-1 Antitrypsin Deficiency on the Human Genome web site. Enjoy the reading.http://www.genome.gov/19518992 (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=764443 Sat, 28 Jul 2007 15:34:00 +0100 764443 http://www.medworm.com/index.php?rid=741510&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F07%2Fgot-abstract.html Yahoo! Thanks Sarah.I don't want to violate copyright law, but here is a snipet of the article's conclusions:A1AT protein expression is increased in preeclamptic placentas. This is the first demonstration that polymerized A1AT is present in serum and urine of patients with preeclampsia, and that this material is bound to placental vascular endothelium. This suggests that the polymerized A1AT may play a role in the pathogenesis of endothelial damage in preeclampsia.Can I translate this into English words? Yes. Warning: I'm not a medical professional nor do I play one on TV. Alpha-1 proteins are sticking together (polymers) and "globbing up" the tiny blood vessels (vascular endothelium) of the placenta in patients with the Z type of Alpha-1. When a placenta doesn't work well, the baby does n... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=741510 Wed, 18 Jul 2007 01:27:00 +0100 741510 http://www.medworm.com/index.php?rid=736361&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F07%2Fpreeclampsia-and-alpha-1-antitrypsin.html About 3 years ago on a lark, I looked up the location of the Alpha-1 Antitrypsin Deficiency gene on the human genome web site. To my surprise, I had an "aha" moment when I noticed that a different gene for hypertension (that I have) was startlingly close to the Alpha-1 Antitrypsin Deficiency gene on the distal long arm of chromosome 14.I've always wondered about this:* I have the M2Z genotype for Alpha-1 Antitrypsin Deficiency.* Both of my children have ZZ Alpha-1, a severely deficient genotype.* Plus the fact that I have a form of hypertension that responds to an ACE inhibitor.Did these facts contribute to the development of my severe preeclampsia??? It seems someone else (a smarter medical research team than I am) has indeed wondered the same thing.Today, someone found my blog by doing a... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=736361 Mon, 16 Jul 2007 03:10:00 +0100 736361 http://www.medworm.com/index.php?rid=729917&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F07%2Falpha-1-public-service-announcement.html My support group leader, Noreen, made this wonderful public service announcement about Alpha-1.Here is her description of the video: 1 min 18 sec - Jul 11, 2007 This is my PSA on the condition called Alpha-1 Antitrypsin Deficiency. It is a spoof on the Viking genes that have been passed down ... all » through hereditary means. The mutated gene pair is called ZZ and can cause emphysema, cirrhosis and/or panniculitus. As many as 25 million people in the U.S. are unaware that they are carriers of the Z gene. It is commonly misdiagnosed as asthma in young adults. Alpha-1 can lead to a lung or liver transplant. I am a lung-affected Alpha and was diagnosed at age 38 with advanced emphysema.Click on the movie to make it play. (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=729917 Thu, 12 Jul 2007 15:48:00 +0100 729917 http://www.medworm.com/index.php?rid=728523&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F07%2Fliver-walk-photos.html (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=728523 Wed, 11 Jul 2007 22:47:00 +0100 728523 http://www.medworm.com/index.php?rid=677376&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F06%2Fpersonal.html Yesterday one of my Alpha acquaintances said, "Jen, you can't take this personally." Before I address why she said that, I'll rewind a bit.Last weekend, I attended the Alpha-1 Association National Education Conference in the Washington DC area. Every year, I attend this conference, and every year, I eagerly anticipate the conference. I suppose I'm waiting to hear about the latest break through in research or the latest idea for a cure. You know. The one thing that will make Alpha-1 a moot point in our lives. Hey, denial ain't just a river in Egypt. When Grace was diagnosed about three weeks after her birth, I began a lifelong journey to learn about anything related to Alpha-1. First I found out how the genetics of Alpha-1 applied to our family, next I learned about the liver and its proces... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=677376 Sat, 16 Jun 2007 03:22:00 +0100 677376 http://www.medworm.com/index.php?rid=659380&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F06%2Ffundraising-for-cure.html Hello Friends and Family,It is time for the Wisconsin Liver Walk on Saturday June 16th at Frame Park in Waukesha, WI. Charlie and I are captains of Team Alpha-1. We walk in honor of our very special daughters, Gracie and Meghan, who have Alpha-1 Antitrypsin Deficiency, a genetic disorder that damages the liver, but also one that causes irreversible lung damage over time. I walk in memory of my cousins, Amy, Beth, and Pam, who became Alpha Angels too early in life and also walk for all Alphas courageously battling their disease on a daily basis. Long live the Alphas!We know a cure will eventually be found, and it is through efforts like this that you can easily contribute to the cause. This year, we decided to raise funds for 3 very worthy Alpha-1/liver organizations. If you would like to s... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=659380 Tue, 05 Jun 2007 22:43:00 +0100 659380 http://www.medworm.com/index.php?rid=651698&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F05%2Fliver-histopathology-of-alpha-1.html Another cool YouTube find! This one is really great. I don't know who the author is but he sure sounds like an expert to me. I love this stuff even though it reminds me what Grace or Meghan may face as they age. We'll see...Click on the movie twice to watch it. If you are on dial-up Internet, you probably won't be able to watch this. (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=651698 Wed, 30 May 2007 22:12:00 +0100 651698 http://www.medworm.com/index.php?rid=644954&cid=t_240560_87_f&fid=34867&url=http%3A%2F%2Fwww.thediabetesblog.com%2F2007%2F05%2F28%2Fa-memorial-for-the-islets-of-langerhan%2F Filed under: Type 1, Type 2, Childhood, Adult Onset, Daily News, Opinion, SupportToday I compose an ode in remembrance for our islets of Langerhan. Their job is far more complex than balancing blood sugar. They balance everything in our metabolism, starting with the hormones that tell us to eat or stop eating. The islets of Langerhan house 4 critical cell groups: beta cells, alpha cells, delta cells, and gamma cells - also referred to as the PP cells and D1 cells. Beta cells are activated by a rise in glucose which results in secreting insulin. As this insulin lowers the blood glucose, amylin is also released. Amylin supports the stability of blood glucose levels by slowing the rate that digested glucose enters the bloodstream. The alpha cells are the opposite - they are responsible for p... The Diabetes Blog blogs http://www.medworm.com/rss/comments.php?id=644954 Mon, 28 May 2007 04:00:00 +0100 644954 http://www.medworm.com/index.php?rid=651702&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F05%2Fout-of-blue.html It was a typical day.In usual fashion, Meghan had woken up earlier than expected. Gracie was still buried under her blankets refusing to leave the warmth of her bed. Meghan woke up happy. She seemed pleased to start her day. "Mornin' mama." To put it mildly, I'm not a morning person. I don't deal well with my girls in the morning. I have to consciously think about treating them kindly and displaying patience. I have to resist the urge to be my true self. You may not know that me, but I do. She is horrible to be around.What I really want is to be left the hell alone. When I wake up, it takes a while for my senses to re-engage. Lights are too bright, sounds are shockingly sharp to my ears, and work clothes against my skin distract me. I can't filter my experiences well, and when the whining ... Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=651702 Fri, 25 May 2007 03:31:00 +0100 651702 http://www.medworm.com/index.php?rid=651712&cid=t_240560_129_f&fid=35709&url=http%3A%2F%2Falphagirls.blogspot.com%2F2007%2F04%2Falpha-1-video.html This showed up on my Google feed today. Cool! The author of the video says this about the video:"stylized (and not too biologically correct) representation of the genetic disease alpha 1 antitrypsin deficiency"Click twice on the movie to play it. (Source: Unique But Not Alone) Unique But Not Alone blogs http://www.medworm.com/rss/comments.php?id=651712 Thu, 26 Apr 2007 22:49:00 +0100 651712 http://www.medworm.com/index.php?rid=478750&cid=t_240560_87_f&fid=34867&url=http%3A%2F%2Fwww.thediabetesblog.com%2F2007%2F03%2F08%2Fsupplementing-evidence-for-diabetic-neuropathy%2F Filed under: Type 1, Type 2, Childhood, Adult Onset, Lifestyle, Drugs, Research, EventsAllow me to explain my choice of photographs. I choose to spot the picturesque sunset over the Ventura Beach horizon, where I will NOT be attending the upcoming Gordon Research Conference on Oxidative Stress and Disease. For those who will be there, do me a favor and drop me a line on Section 3: Oxidative Stress and Diabetes. Here's what I've got so far... Alpha-lipoic acid is approved in Germany as a drug for the treatment of diabetic polyneuropathies. Alpha lipoic acid shows evidence of being effective in the treatment of diabetic neuropathy and may be useful in treating some other aspects of diabetes. It may help prevent the oxidation of LDL cholesterol and may be protective against oxidative stress. ... The Diabetes Blog blogs http://www.medworm.com/rss/comments.php?id=478750 Thu, 08 Mar 2007 05:00:00 +0100 478750