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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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  • mrsmop
    mrsmop lucynicholl

    Posted

    Hi Lucy, it is rare and all I can suggest, is asking the hospital whether they can put you in touch with any support groups and whether there is anyone else in your area, or even in Scotland.  Do you come under Ninewells?
    • lucynicholl
      lucynicholl mrsmop

      Posted

      Hi smile

      Yes we come under Ninewells. Unfortunately there are only 2 known people in the UK with the exact same disability as her, and that is her dad and uncle. There's can from nowhere, something to do with their 

    • lucynicholl
      lucynicholl

      Posted

      Parents gene. 

      There are 2 others known to live in Germany. However, chorea itself isn't so rare. I don't know how closely other types of chorea are related to this one.

      Thanks.

      Lucy 

  • mrsmop
    mrsmop lucynicholl

    Posted

    I used the search engine DuckDuckGo, which produced different results from Google and Bing.

    I haven't looked at Google Scholar, which is also quite useful sometimes

    Good luck Lucy

  • miranda43181
    miranda43181 lucynicholl

    Posted

    I to have Benigh Hereditary Chorea. I live in the usa and would love for you to email me with any questions
    • SRIcyminareta
      SRIcyminareta miranda43181

      Posted

      I am in the USA also and would love to talk. I've never met anyone with BHC besides maybe my dad

    • vickie07750
      vickie07750 miranda43181

      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

    • amanda92533
      amanda92533 vickie07750

      Posted

      The females on my mom's side of the family has bhc disorder. We all look simualor. We have shacking problem. And learning disablitys. the neurologist says that learning disabilties has not to do with our disdord if there anyone that has these problems let me know or give me advise, thank you

  • SRIcyminareta
    SRIcyminareta lucynicholl

    Posted

    I also have benign hereditary chorea, i believe my father did as well. I am in the USA. I've never met anyone else who has it besides my dad. Would love to talk to anybody through email.

  • SRIcyminareta
    SRIcyminareta lucynicholl

    Posted

    I started a Facebook group if anyone is interested. Just search benign

    hereditary chorea in the groups.

  • carrie98410
    carrie98410 lucynicholl

    Posted

    My 5 1/2 year old daughter has BHC and neither my husband or I are carriers. It was a random genetic mutation that caused this, so we have no prior experience/knowledge of this disorder. I would love to have some one to contact with questions, or would love to help others going through this, if I can, as there don't seem to be medical "experts" for this. I am in the USA also & just asked to join the Facebook page.
    • vickie07750
      vickie07750 carrie98410

      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

  • milena7777777
    milena7777777 lucynicholl

    Posted

    Hi Lucy, 

    I have a 12 year old with BHC.  He is the first mutation and I dont know anyone else with this condition.  It seems to be very rare...   Would also like to know grownups with this condition to find out how it affects them, how much does it improve with time and if there are any treatments they tried and were successful and without side effects... 

    Thanks

    Milena

    • vickie07750
      vickie07750 milena7777777

      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

  • nicola4183
    nicola4183 lucynicholl

    Posted

    hi I was diagnosed with a disease called neuroacanthocytosis last month& was wondering if anyone else heard of it
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