r/behindthebastards • u/deeve09 • 21h ago
Discussion Bonus Anti-Bastard: Marjorie Guthrie, founder of the Huntingtons Disease Society of America
This organization is dedicated to bettering the lives of those affected by the cruelest disease known to man, Huntingtons Disease (HD). They aid in everything from community aid to research for possible treatments. https://hdsa.org/about-hdsa/about/
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u/shesinsaneornot FDA SWAT TEAM 6h ago
It really is one of the cruelest diseases, now that HIV and AIDS are treatable. I was a kid in the 80s but I remember seeing a news story (probably on 60 Minutes) about how they isolated the gene that causes Huntingtons Disease.
The good news was that with this testing, doctors could tell someone with Huntingtons in their family whether or not they have the gene... but the bad news is if you had the gene, there was no treatment or any way to delay the symptoms, Huntingtons was inevitable. Several adults with a parent with Huntingtons were interviewed about whether they would get tested and they were split - some wanted to know so they could plan accordingly, but several were adamant that they didn't want to know they were doomed and so they wouldn't get tested.
Imagine watching a loved one die from a chorea, then a doctor reminds you that you may develop this same disease. You can take a test to determine whether or not you carry the gene, but if you have it, then it's only a matter of time until you experience the deterioration firsthand. A horrific choice I'm glad I'll never have to make (one parent died from an aneurysm in their 50s and the other is pretty healthy for someone in their 80s).