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Testing Negative For Huntington’s Disease
Huntington’s Disease is a neurodegenerative disease with a 50/50 chance of occurring in any child of a parent affected by this autosomal dominant gene. It has no cure and death occurs after 12-20 years. There is a genetic test. How do you handle the “survivor’s guilt” when having a negative result?
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Immediately l felt like we were family when reading your comment and my heart ❤️ is profoundly moved by your path. Thank you so much for caring.
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2 ReactionsThank you so much for sharing. How are you?
Alexa2020, I am so sorry for all of your losses, especially your husband. What were the ages when most of your family passed? The TV show Virgin River has a HD story line, and I always think when I see any mention of these horrible diseases that shining a light in any amount might bring about some positive advances in care and cures. I can understand every situation in when you might want to know, and not want to know, deciding how to move forward with that knowledge that you have it must be a terrible burden to carry. God bless your family, and you for trying to be there for them as they navigate such a weighty decision and outcome. ❤️
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3 ReactionsSuch an empathic and insightful response. Grateful.
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5 ReactionsButchmaltby, these posts on this sight are usually from people who feel each other’s frustration and pain. I find it heartening to see how much humanity there still is in our world. God bless and have a great weekend.
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3 ReactionsThank you and my heartfelt prayers tonight for all.
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3 Reactions@alexa2020 My husband is currently battling with Huntington's disease. He is the first in his line to be diagnosed, but based on symptoms before death we were able to trace it back. It's difficult trying to help the next generation (my kids, nieces and nephews) with resources if they choose to be tested. My husband had one sibling who died with similar symptoms but was not diagnosed. It took many years of symptoms, dealing with multiple doctors before someone finally pointed us in the right direction for a diagnosis. There's also research giving hope to eventually having a cure, but too late for my husband. Fortunately we have an excellent care team that has helped with symptoms. It sounds like you are helping others, Thank you. We were told this is considered a rare disease, but based on the 50-50 genetics and our family history I believe it under-diagnosed.
I agree with other comments here. Helping others find resources may help with survivors guilt. I wish you well and after being a caregiver, I find joy that you and others who test negative do not have this burden. Thank you for posting.
@cjme please read this… https://www.bbc.com/news/articles/cevz13xkxpro
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2 Reactions@jenatsky Thanks, this is great! This is extensive and expensive but great news as I would have done anything. There's been a great deal of research in the U.S. including attempts to develop medication to delay the onset, possibly for a lifetime, giving hope for our next generations. As more people are diagnosed, due to recognition of symptoms, I'm hoping the fight for a cure will be more aggressive. Ten years and multiple neurologists was too long to wait for a diagnosis. He had three classic symptoms and fifteen minutes with a knowledgeable neurologist was all it took to finally diagnose. I'm pushing for education also.