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It is also available as a book with added comments and thoughts. It is a fundraiser for Multiple System Atrophy research - the disease that killed my wife and the catalyst for the blog. Please consider buying either a Kindle version from the Kindle store or a paperback version from Amazon. The title is "Living With A Snowman" by Scott Poole. It is available for purchase HERE.

Tuesday, November 13, 2007

Alphabet diseases

I have unfortunately learned over the past year about a segment of medicine that I would have rather not. That segment is what I call the alphabet diseases. When you go to the doctor with a complaint or problems you are looking for a diagnosis and then a treatment and/or cure. What you do not want is a diagnosis and a pat on the back. The latter is what seems to happen with the alphabet diseases. What are the alphabet diseases, you ask? You are aware of some of them such as MS, MD, and ALS. These are terrible diseases in their own right with prognoses that are not good. However, I have learned of others that are as bad and/or worse due to the lack of knowledge and information available. How would you like a disease that when you are seeing medical staff for the first time have to be told what the disease is. Blank stares or mumbles signify a lack of understanding for what the jumble of letters you just threw out mean. Two of these alphabet diseases that I have some personal knowledge of now are MSA (Multilple System Atrophy) and PSP (Progressive Supernuclear Palsy). These are both diseases that have a terrible prognosis and worse than that, no treatment or cures! Not only that, but as I said above they are almost unknown in the medical world as well. MSA is such a rare and"orphaned" disease that the national support organization had to cancel the plans for the annual meeting due to lack of funds. They have no spokesperson or telethon, like I said they can't even get support for an annual convention. PSP does have a Patricia Richardson (of Tool Time fame) fame as a spokesperson due to her father dying of the disease, but again -ask most medical people what it is and wait for the stammering to begin. I started this two days ago and have been interupted twice. I have lost my original thoughts and fervor for the subject. Basically it is a warning that you do not want to hear a diagnosis with an alphabet disease in it. G'Day

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