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Benign Hereditary Chorea

Posted , 18 users are following.

lucynicholl
lucynicholl

Hello, 

I have a 2 and a half year old daughter who was diagnosed with the above since birth, there was a 50% chance she would have this as her dad carries the gene.

I don't know anyone else who has this, I think it is quite rare, noone in my area (Tayside, Scotland) has a condition similar to it, at her age. It would be great if someone else who has this condition or something similar would be able to contact me?

Thanks for taking the time to read this, I appreciate it.

Thanks

Lucy 

1 like, 38 replies

38 Replies

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  • amanda92533
    amanda92533 lucynicholl

    Posted

    What are your symptoms? These are some of my symptoms I have minor tremors, learning disabilities, and me, my daughter, mother, and sister looks alike. I live in USA and I don't know anyone in my area that has this. We had to go through physical and occasionally therapy. I sometimes have problems think about what I what to said.
  • vickie07750
    vickie07750 lucynicholl

    Posted

    Hello Lucy,

     We too just got a Dx of BHC for my 4 year old who was adopted from China at 2.5 years.  We got no family history and it was taken us 20 months to get this dx. I would love to have someone to communicate with about this. I have found only one support group on facebook but it is small and the members don't communicate that often. Thanks, Vickie in USA

  • sarah76217
    sarah76217 lucynicholl

    Posted

    Hi my daughter has this condition not sure if you still check this thread but would love to chat if you wish too. I am in s Wales and she is now 17.
    • naresh61450
      naresh61450 sarah76217

      Posted

      My daughter has had this problem since the age of 6 and is now 18. Her condition worsened slowly over the years nut for the past few years seem to have steadied. She has normal cognition and is able to attend mainstream college. Any thoughts on what treatments might help ? Has anyone considered stem cell treatment ?
  • naresh61450
    naresh61450 lucynicholl

    Posted

    My daughter has had the symptoms since the age of 6 and a genetic test when she was 16 determined she had BHC. She is 19 now and is not able to write or speak clearly. Her IQ and cognitive skills are normal and she attends mainstream college .

    Does anyone know of any line of treatment that reduces symptoms ?

    • sarah76217
      sarah76217 naresh61450

      Posted

      My daughter has had symptoms since birth and it was only picked up on since about 3 she is 17 now and only done blood tests to confirm 3 months ago she has always been mainstream she has just started a medication called terra benzene to reduce the tremors which are up and depending on the day they are making drowsy though and side effects can be depression x

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