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Genetic Code Help, Hypo Prolinemia

Tue, 06/02/2020 - 01:30
We have a new diagnosis for my 6 month old grandson, hypo prolinemia. It's type 1, very rare, and apparently causing his seizures. I don't see it on this website's list of genetically caused epilepsy - epilepsy dot com, learn, epilepsy-due-specific-causes, specific-genetic-epilepsies. Any advice or help from families here is appreciated! I think the code for his disease is PRO... or ALDH4A1. Fyi, we're in Vietnam, have limited access to and time with our doctor, and there are no genetic MDs registered in the country. Thank you again!

Comments

Hi, Thank you for posting,

Submitted by Anonymous on Tue, 2020-06-02 - 09:08
Hi, Thank you for posting, For additional information about Hyperprolinemia, please visit: https://ghr.nlm.nih.gov/condition/hyperprolinemia . You all may want to consider joining our Rare Epilepsy Network, (REN). Participating in the REN network offers may benefits, including improving the quality of care for people living with rare epilepsies, finding better treatments, helping researchers understand your grandson's rare epilepsy and much more. The more people that join the REN, the more information we will have about each rare epilepsy and the faster epilepsy researchers will be able to understand their cause, improve treatments and develop cures. To learn more about REN and how to participate, please visit: https://www.epilepsy.com/make-difference/research-and-new-therapies/engagement/rare-epilepsy-network-ren 

Thank you so much. I've

Submitted by Erika_VN on Tue, 2020-06-02 - 11:46
Thank you so much. I've visited these pages. At REN, I don't see how to join. Also, are my codes correct, and why aren't they included on EF's rare genetic epilepsies page? 

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