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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cctee | @cctee | Jun 5 8:45am

You thank God you are negative and have been spared this disease. Then, you roll up your sleeves and be everything you can be for your family who do have it. And, find a way to raise awareness and support finding a cure. I am so sorry one of your parents had/has HD. Do not waste precious hours of your life feeling guilty for a blessing that God has given you. Best wishes for you and your family.

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butchmaltby | @butchmaltby | Jun 5 2:26pm
In reply to @cctee "You thank God you are negative and have been spared this disease. Then, you roll up..." + (show)
@cctee

You thank God you are negative and have been spared this disease. Then, you roll up your sleeves and be everything you can be for your family who do have it. And, find a way to raise awareness and support finding a cure. I am so sorry one of your parents had/has HD. Do not waste precious hours of your life feeling guilty for a blessing that God has given you. Best wishes for you and your family.

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Thank you so much for your encouragement. Do you know this illness?

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cctee | @cctee | Jun 5 3:03pm
In reply to @butchmaltby "Thank you so much for your encouragement. Do you know this illness?" + (show)
@butchmaltby

Thank you so much for your encouragement. Do you know this illness?

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I know enough about it to understand the devastation that it brings, but I do not have a family history of it or even any friends who do. I am facing symptoms of another devastating neuro disease MSA. All of these neurodegenerative diseases are so in need of treatments and cures. And, if I understand your original post you tested negative for the gene, please do not beat yourself up, that is a good thing. And, if others in your family are struggling, you can be their rock, which also isn’t easy to watch someone you love struggle. I can say without question anyone that loves you is happy for you. Only God knows why one is taken and one is spared. Live your life well, and be happy, because we all have an end ahead of us. ❤️

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butchmaltby | @butchmaltby | Jun 5 8:08pm

Your response here is wise and beautiful. Love never fails.

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methel | @methel | Jun 5 9:08pm
In reply to @cctee "I know enough about it to understand the devastation that it brings, but I do not..." + (show)
@cctee

I know enough about it to understand the devastation that it brings, but I do not have a family history of it or even any friends who do. I am facing symptoms of another devastating neuro disease MSA. All of these neurodegenerative diseases are so in need of treatments and cures. And, if I understand your original post you tested negative for the gene, please do not beat yourself up, that is a good thing. And, if others in your family are struggling, you can be their rock, which also isn’t easy to watch someone you love struggle. I can say without question anyone that loves you is happy for you. Only God knows why one is taken and one is spared. Live your life well, and be happy, because we all have an end ahead of us. ❤️

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Yes, you are so right. 8 years ago I had a meningioma which bled and the neurosurgeon who recommended surgery told my son that even with the surgery I had only a 1 in 10 chance of having a meaningful life. Most likely I would die in the neuro ICU without regaining consciousness. Well I was given the chance to have a meaningful life and it’s my job to make it so.

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butchmaltby | @butchmaltby | Jun 5 9:55pm

Thank you for sharing. You have courage.

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cctee | @cctee | Jun 6 8:38am
In reply to @methel "Yes, you are so right. 8 years ago I had a meningioma which bled and the..." + (show)
@methel

Yes, you are so right. 8 years ago I had a meningioma which bled and the neurosurgeon who recommended surgery told my son that even with the surgery I had only a 1 in 10 chance of having a meaningful life. Most likely I would die in the neuro ICU without regaining consciousness. Well I was given the chance to have a meaningful life and it’s my job to make it so.

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In God’s plan there was a reason for you to survive. Making it meaningful is a great way to show your gratitude. ❤️

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2 replies
methel | @methel | Jun 6 9:33am
In reply to @cctee "In God’s plan there was a reason for you to survive. Making it meaningful is a..." + (show)
@cctee

In God’s plan there was a reason for you to survive. Making it meaningful is a great way to show your gratitude. ❤️

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Yes. I believe I still have a job to do.

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butchmaltby | @butchmaltby | Jun 6 10:59am
In reply to @cctee "In God’s plan there was a reason for you to survive. Making it meaningful is a..." + (show)
@cctee

In God’s plan there was a reason for you to survive. Making it meaningful is a great way to show your gratitude. ❤️

Jump to this post

Well said. We share a common faith.

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alexa2020 | @alexa2020 | Jun 6 12:51pm

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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