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Testing, or at risk Discuss testing for Huntington’s disease, and living with the risk of HD

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Old 21-08-18, 11:01 PM   #1
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Join Date: Aug 2018
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Default Test results

I am 24 and decided to get tested for Huntington’s last week due to my family history, and family planning in the near future. I received the test results today and my CAG is 38. My doctor did not know much about this, and said that he was expecting either a positive or a negative result and this falls into the unknown area. He encouraged me to speak with a genetic counselor. My question is, has anyone had an expierience with a result in this area. Is anyone showing symptoms with a CAG of 38, and what age was the onset? Does this mean I may not develop symptoms, or are symptoms likely? I know I’m going to always worry, and I’m afraid of developing symptoms soon. Any information or advice would be greatly appreciated.
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Old 22-08-18, 07:03 PM   #2
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Location: Hastings, East Sussex, UK
Posts: 1,155
Default Re: Test results

Hi there

First of all, just take it easy … and take a few deep breaths:

People with an HD gene containing between 36 and 39 repeats are in the ‘reduced penetrance’ range. Some people in this range will develop symptoms of the disease, while others won’t.

The genetic 'gray area' of Huntington's disease: what does it all mean?

I don’t think this is the correct place for passing on too much info to you as you seem to have received your result without much background information, GP knowledge or counselling. You really do need to have a few sessions with a Genetic Counsellor where you will gain a great deal of relevant info - and can discuss family planning options. Just be a bit wary of reading about HD in social media groups - you could get mixed messages.

I think these HDBuzz “easy reads” are probably the best way to learn about the genetic grey area until you can book some counselling sessions:

The first group includes people who inherit a CAG size of 36-39 repeats. Doctors and researchers classify them as having inherited a reduced penetrance mutation. Some people who have a CAG of, say, 37 may live a full natural lifespan without ever developing HD, whereas others will show signs of the disease in their life.

Slightly long CAG repeats are more common than we thought

How long is too long? Rethinking the Huntington’s disease ‘gray area’

Best wishes …

New Day; New Outlook; New Challenges; New Possibilities; New Outcomes; New Successes
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Old 24-08-18, 03:17 AM   #3
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Default Re: Test results

Thank you for your response. I am meeting with a genetic counselor in two weeks now and I’m hoping that will help. I just feel so much different after receiving the results and I hope that my mind can return to normal and I can live without thinking about these results everyday. I am least relieved that I may be able to break the chain through IVF, and not have to worry about my offspring having to face this terrible disease.
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Old 30-08-18, 10:44 PM   #4
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Default Re: Test results

Hi there I'm really disapointed you did not receive the right help and counselling with the genetics team their support and help too me was vital. Yes you are in a rare catogarory like me your count is below 40 so you may or may not ever get the symptoms but it can be passed along through your children who could get a higher count !!! That's something I live with but again I've read through studying the grey areathat their could be a less risk of passing it on take care xx
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