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Old 07-09-18, 12:24 PM   #1
Shenton85
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Join Date: Aug 2018
Location: Staffordshire
Posts: 1
Default New to the message board!

Hi everyone, it is my first time posting on here!
My husband tested positive for the HD gene in March. He is currently 38 and showing no physical symptoms. His CAG was 44. My husband has suspected for a few years that he had Huntington’s but it took a while for him to make the decision to finally go for the test. His mum, gran and auntie all had HD.
We found the process off the testing long but the counselling we received was great and helped us through the process.
Since receiving the news we have focused on fundraising and raising awareness. We did a skydive last month and to date we have raised over £10,000.
My husband is feeling anxious but positive about the trails and is hoping that something will be available in the near future.
We have two children aged 10 & 5 which made the test result even harder to deal with but seeing all the positive news is giving us hope that something will be there should are children once older have the gene. We have decided at this time not to tell our children and are going to wait until they are older when we can hopefully tell them there is something to help them should they have the HD gene.
Since June we have been attending our local HD support group, we have found this really helpful and are looking forward to attending the HD family weekend in October with them.
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Old 14-09-18, 08:54 AM   #2
Trish
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Join Date: May 2010
Location: England
Posts: 2,391
Default Re: New to the message board!

Hi Shenton

Welcome to Messy Board.

Sorry to hear your hubby has the pos gene and it has been so prevalent in the family.

Good to see you are engaging with the local support group. It's an amazing amount you guys have raised!
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Old 21-09-18, 09:03 PM   #3
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: New to the message board!

Hello Shenton this board will give you great support and I hope some positviness amist the sadness. I'm hd positive and every day is a challenge when you have children I totally know how you feel about the thought of the hd gene effecting them but as you say there really is massive progressions in the treatment and hopefully one day a permanent cure I wish you all the best and always love and strenghxxx
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Old 21-09-18, 09:05 PM   #4
Zlmd2017
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Join Date: Mar 2017
Posts: 19
Default Re: New to the message board!

And raising 10 grand is amazing well done too you and your hubbyxx
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