1. < Brain & Nervous System

Testing Negative For Huntington’s Disease

Posted by butchmaltby @butchmaltby, Jun 4 8:34pm

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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butchmaltby | @butchmaltby | Jun 6 1:56pm

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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butchmaltby | @butchmaltby | Jun 6 3:13pm
In reply to @alexa2020 "my husband, father in law, his grandmother and his 2 siblings all died from HD. I..." + (show)
@alexa2020

my husband, father in law, his grandmother and his 2 siblings all died from HD. I have been trying to help the nieces, nephews who are testing both positive and some thankfully test negative with many more not knowing or choose not to know. You can help your family by leading them to the resources and education that are available to them. I cant imagine how you feel but perhaps taking action to help your family members would help your feelings about it all.

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Thank you so much for sharing. How are you?

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cctee | @cctee | Jun 6 3:48pm
In reply to @alexa2020 "my husband, father in law, his grandmother and his 2 siblings all died from HD. I..." + (show)
@alexa2020

my husband, father in law, his grandmother and his 2 siblings all died from HD. I have been trying to help the nieces, nephews who are testing both positive and some thankfully test negative with many more not knowing or choose not to know. You can help your family by leading them to the resources and education that are available to them. I cant imagine how you feel but perhaps taking action to help your family members would help your feelings about it all.

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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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butchmaltby | @butchmaltby | Jun 6 4:45pm

Such an empathic and insightful response. Grateful.

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1 reply
cctee | @cctee | Jun 6 5:11pm
In reply to @butchmaltby "Such an empathic and insightful response. Grateful." + (show)
@butchmaltby

Such an empathic and insightful response. Grateful.

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Butchmaltby, 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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butchmaltby | @butchmaltby | Jun 6 5:55pm

Thank you and my heartfelt prayers tonight for all.

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