Alzheimers. Parkinson's. ALS. Depression. OCD. Tourrette's. Do these words create an image in your head? Have you heard of someone that suffers from one of these ailments, or worse love someone who does? Now, what if I wrote "Huntington's Disease"... now what? Images? People? Nothing. Now, combine the dementia from Alzheimer's, the movement problems of Parkinson's, the degeneration of ALS, the hopelessness of Depression... let me introduce you to my new nemisis... HD.
Huntington's Disease is a degenerative neurlogical disorder passed genetically. Children of a person who has HD has a 50/50 chance of inheriting the mutated gene found on the dorsal end of chromosone 4. The Readers Digest version of this explanation is that our chromosones are built out of proteins, and the combination of proteins on the end of that single chromosone is the cause of this mess. Here is a link to give a little better understanding... http://www.compgene.com/hd.htm
My grandfather developed symptoms in his 70's. My uncle was not as lucky, being diagnosed at 50 after showing symptoms for a few years. On the morning of June 27, 2011, at the age of 59, my uncle, José De Jesus Sotelo Jr lost his fight with Huntington's Diseasee. His story is over, but that's not the case for others!!!
This disease and I, we have personal business. I will not stop... I will not... until this fight is over. I will not stop fighting when effective 'treatment' is found. I will not STOP until the cure is here. It will be here. In my lifetime, I want to see this done. I'm not asking to stop death. We will all die. But slowly, painfully, wasting away, dying DAILY, for 20 long years?? How is that HUMANE?
There is STILL so much to write about this disease, and there is no way that I can write it all here, all now... but I'll be sending more information as I have it. I'm still learning about Huntington's Disease. Everyday I get an email from the local HDSA chapter telling me what the latest in research and development is for this disease. And as much as I'm learning, I still know so little. And if I'm TRYING, and still know nothing, imagine what people who have only heard of the disease on "House" must know... NOTHING! Knowledge is power. And at this point that is the only power that we have against this disease.
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