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Genetic Code Help, Hypo Prolinemia
Tue, 06/02/2020 - 01:30Topic: Parents & Caregivers
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!
Hi Erika,I know that you are
Submitted by Patriotrehab on Fri, 2020-06-12 - 21:42
Hi Erika,I know that you are new to the forum and have been using it to get answers since you don’t have much in the way of resources in Vietnam. I just wanted to make sure that you saw the notice that they are planning to close the Community Forum and Chat Room, so this resource won’t be available effective July 1. I’m so sorry as I had hope to be able to answer your questions and provide you help. I even called the 24/7 Helpline last night and told them how afraid I was about the Epilepsy Foundation’s decision. I called my local chapter today and they weren’t even aware of the decision. Nobody in the Epilepsy Foundation that I’ve talked to seems to agree with this, but they also don’t seem to know how to help and have also said they cannot help because they are part of the foundation. I feel bad for all of us with epilepsy or as a caregiver of a person with epilepsy that are being told we cannot ask a question and get answers or use Google to find the answers that are already here on the forum because they are closing us down. Social media and and their other suggestions just don’t work the same way and some of us just don’t use social media. Please let me know if there’s anything that I can do to help you before they close the forum.