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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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  • nicola4183
    nicola4183 lucynicholl

    Posted

    the disease neuroacanthocytosis

    comes under the hereditary chorea category as it's passed on by a dodgy gene from both parents

  • chris12238
    chris12238 lucynicholl

    Posted

    Hi Lucy

    I am 17 I live in Northern Ireland and i have this condition.

    If you want to ask questions please feel free.

    • vickie07750
      vickie07750 chris12238

      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

  • emma913
    emma913 lucynicholl

    Posted

    Hi Lucy

    I've just seen your post on here. I live in South East England and I too have Benign Hereditary Chorea (although when diagnosed it was called Congenital Chorea). I have it, my Mother and Grandmother also have it. I'm the process of trying to get a diagnosis for my son (aged 6) as well as I think that he may have it. It is rare and unfortunately not many people (inc professionals) seem to know a lot about it but you're not alone x

  • sarah38568
    sarah38568 lucynicholl

    Posted

    Hello

    My daughter has suspected BHC we are waiting for an appointment to have the tests done, which is taking a quite a while. In the meantime I am trying to gather as much information as I can. I have tried to find the Facebook Page that has been mentioned, but I can't seem to find it, could anyone please tell me if it's still operating? It would be so beneficial to be able to hear people's stories about this condition.

    Many thanks

    Sarah

    • carrie98410
      carrie98410 sarah38568

      Posted

      Hello - I'm sorry that you are having to go through this with your daughter. Yes, the Facebook account is still active. I am happy to help in whatever way I can. My daughter with BHC is now 6 1/2 years old & has made amazing progress over the years. It has taken a lot of therapy & work, but is rewarding to see the progress.

      Please let me know if I can help - I hope you find answers very soon.

      Best Regards,

      Carrie

      Emis Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to exchange the details.

      http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

    • carrie98410
      carrie98410 sarah38568

      Posted

      Hi Sarah - 

      Please note I sent you a private message including the link to the Facebook page for Benign Hereditary Chorea.  

      Thank you,

      Carrie

    • 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

    • naresh61450
      naresh61450 carrie98410

      Posted

      Hi my daughter who is 19 has BHC. We noticed her symptoms at the age of 8 which gradually got worse but it seems to have plateaued now.

      What kind of therapy has worked for you ? We tried various things but nothing seems to improve her condition 

  • Robinqui30
    Robinqui30 lucynicholl

    Posted

    Hi Lucy,

    Today is 1/14/16 and I just found out after 30 years of thinking i have CP that I have BHC. The reason I know this is because my daughter born 1/3/15 also has BHC, we got genetic testing done because she had the same issues at birth as i did. Please if you have any questions i will try and give my input.

  • lucynicholl
    lucynicholl

    Posted

    Hello. Can anyone help with the Facebook page? I can't find it at all.

    Sorry I haven't replied in a while, I hadn't noticed the responses.

    Lucy

    • carrie98410
      carrie98410 lucynicholl

      Posted

      Hi Lucy - Unfortunately, this website doesn't allow the posting of links to websites, so I will send you a private message with the link.  If anyone else would like it, please let me know & I'll send you a PM with the link as well. 

      Carrie

  • Arrow99
    Arrow99 lucynicholl

    Posted

    Hi Lucy, 

    Wow! I can't believe that I am actually shocked that I have actually found another family that has this. We are a family that live in Canada and have never found another person that has this. I don't think we have the exact same condition but it is very, very close. Myself, a 55 year old woman, my sister, 53, my daughter, 29 and my niece have been diagnosed with benign congenital chorea. Our condition is very, very rare. As far as I know, we are the only family in Canada that has it. We had tests done when my mother died and were told that we are missing chromosome 14. Our condition started with our mother. In our cases it runs in the females and not all females have it. 

    • amanda92533
      amanda92533 Arrow99

      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.
    • eden61119
      eden61119 Arrow99

      Posted

      Hi Arrow! In what part of Canada do you live? I am adopting my nephew and he has BHC. We live just outside of Vancouver. I believe benign congenital chorea is an older name for the same condition. My nephew is 11. I would love to talk sometime!
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