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x-linked periventricular heterotopia

Hello to all,

 

Hoping to gain information on x-linked periventricular heterotopia . If anyone could help me it would be

greatly appreciated.

Thank you,

Carol

 

 

Comments

Re: x-linked periventricular heterotopia

Hi Carol,

My daughter was diagnosed with X-linked periventricular heteropia. While I am no medical expert, I know from my research this rare disease has a very broad spectrum of symptoms and levels of acuteness. What type of information are you looking for?

One of the resource that has helped me better understand it was provided by our genetic counsellor. I found it to be quite detailed and it is best if you are able to review this with a medical professional although many may not have heard of the disease. Here is the link: http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=gene&part=x-pvh

I have now started a Facebook group in hope of collecting information and sharing support with parents and even medical professionals:http://www.facebook.com/home.php?#/group.php?gid=195006047174&ref=search&sid=563061253.744203669..1

Hope this helps. You can always email me at yoyo_dupont@hotmail.com with further questions or comments.

Best regards, Yolaine