Benign Hereditary Chorea

Brain and nerves
1

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 

2

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?

3

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 

4

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 

5

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

6

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

7

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.

8

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

9

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

hereditary chorea in the groups.

10

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.

11

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

12

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

13

the disease neuroacanthocytosis

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

14

Hi Lucy

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

If you want to ask questions please feel free.

15

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

16

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

17

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

18

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.

19

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

20

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