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Benign Hereditary Chorea

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raymondbruce
raymondbruce

I was born into a deaf family, but me and my brother were the only ones with Benign Hereditary Chorea which they didn't find out until I was 18. I also have hypothyroidism. I was wrongly diagnosed with some sort of Ataxia when born. When we were born my parents were told that we could be either deaf or disabled.

I am now 23 years old and have 2 daughters, 1 of which has my gene and the other doesn't. The other has a Pulminary Valve which was sorted when she was 9 days old.

I was wondering how this gene will effect my future as I want to be there for my kids but was reading online that BHC patients have 50% higher risk of getting dementia in their 50's.

Is there anyone else in Scotland/the UK that has this disability?

I would love to meet up with other people to see how they cope with their illness.

I hope to hear back from other people soon.

Thanks

Raymond

0 likes, 4 replies

4 Replies

  • carrie98410
    carrie98410 raymondbruce

    Posted

    Hello - my 6 year old daughter has BHC and we live in the USA. There is another discussion string on this website on the subject, if you're able to find it (I can't at the moment for some reason). Also, we have a group on Facebook (called simply Benign Hereditary Chorea) if you're on there, as a means to ask questions of others.

    As for my family, we've done a lot of research on BHC as there doesn't seem to be any experts on the subject. What I do know is that each person is affected very differently by BHC. Overall, in my research I've learned that the worst part of it is during the early years and symptoms generally improve into the teen years. I have not found the information on dementia that you note.Where did you find that statistic?

    My daughter currently uses a walker to get around safely (to prevent falls) for longer distances and in crowded spaces. She has weak leg and core strength and we have her in horse therapy and swimming therapy to help with strengthening. In the past, she was in speech therapy, but has since caught up to her peers. She also receives occupational and physical therapies while in school to help with fine and gross motor functionality. Overall though, she is doing remarkably better than even one year ago.

    If you have any questions related to your child with BHC, I would be happy to help, if I can. This has been a big learning experience for sure.

    Best Regards,

    Carrie

    • raymondbruce
      raymondbruce carrie98410

      Posted

      Hi Carrie.

      I found this out on the doctors medical journal about the dementia.

      When I was growing up I too had to use a walking frame but mine was for shorter distance walking and for long distance walking, I was stuck in a wheelchair.

      This happened right up until I was 15/16 years old then one day I went to my OT with my mum and he said scrap the wheelchair when going to school as I was turning up to class late as it took longer to get there. He said instead of a wheelchair, we will get you a scooter (the old people type with 4 wheels)

  • raymondbruce
    raymondbruce

    Posted

    Which in time took away all motivation to walk.

    Since then I got my bike out the shed and said to my dad teach me how to ride a bike, swim and even walk " properly".

    Growing up is hard with all the bullies, name callers etc. and even people staring at you as you try to walk down the street. People call you cripple, mongul or even peg leg.

    As for my daughter who also has my disability, her mum stopped all contact so I cannot see her. (Her mum was the one who posted on here 11 months ago)

    If you have any questions about the disability, I would be happy to answer them as I've been through it. I've had MRI Scans, physiotherapy and occupational therapy all to get me to where I am today.

    Thanks

    Raymond

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