Community Forum Archive

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 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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I’m sorry that you seem to be having trouble with some of these pages. I just put the links into my browser and will look up the rare genetic codes that you provided to see if I can help you since you haven’t received a response. I’m also so sorry to hear that your grandson has this rare genetic cause for his seizures. I haven’t been on the site much, so that’s why I was delayed in responding to you. I do try to follow-up with those that I have responded to in the beginning. I hope to post again with some way to help you in the next day or so, possibly with some answers to your questions about how to use the resources the ConnectHelp provided you. 

I’m sorry that you seem to be having trouble with some of these pages. I just put the links into my browser and will look up the rare genetic codes that you provided to see if I can help you since you haven’t received a response. I’m also so sorry to hear that your grandson has this rare genetic cause for his seizures. I haven’t been on the site much, so that’s why I was delayed in responding to you. I do try to follow-up with those that I have responded to in the beginning. I hope to post again with some way to help you in the next day or so, possibly with some answers to your questions about how to use the resources the ConnectHelp provided you. 

Hi Erika,So, I was able to find some quick answers to your questions for you. The correct codes are PRODH and ALDH4A1. I found this on the page for the first link that was provided by ConnectHelp under the title where it describes Inheritance Pattern.Also, the REN page does allow you to join towards the top of the page under where it has the picture. The text that says “See the REN dashboard and make data requests!” is hyperlinked so that you can click on it. That will open it up to a new page where you can “login’. Select that and then choose Register here. It will then give you the option to sign up. As for why Hyperprolinemia is not on the Epilepsy Foundation’s Rare Genetic Epilepsy pages already...well, I don’t have an answer for you because I’m not on their staff, but my suggestion is that you could make the suggestion that they include it on another board within the forum called Advocate for Epilepsy. I did read about Hyperporlinemia and it sounds like it is rare for Type 1 to experience seizures, although it can happen as well as some other possible disabling conditions. If there is anything that I can do to help support you and your family during this time, please do not hesitate to reach out to me. As a licensed clinical social worker and certified rehabilitation counselor with a background in special education, I am well versed in a number of different disabilities, not just seizures and how they impact the lives of individuals and their families. 

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.