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Diet tips?

Karabi Message
17 Apr 2018, 01:01 PM


I just joined this group and am happy to find some fellow travelers. My daughter is almost 20 and was diagnosed when she was 16. We were at NIH for a while and now are seeing folks at Hopkins including Dr Valle. She has really struggled with the diet, especially how to track it. She was using the weight watchers app to get the protein levels but then just using a note to add them up over the day. Does anyone have any tips on how to track the protein preferably on a phone?

Second, can anyone share any information on gene therapy? I know it has been approved for some diseases but GA isn't even in the pipeline as far as I know. How could we advocate for that?



hannah2012 Message
26 Apr 2018, 06:08 PM

Hi Karabi, 

This is not a very active group unfortunately as you can see by the slow responses or no responses... I am 39 years old and was diagnosed when I was 14 at which time i did not follow the diet well. Right now I am more or less on track with diet and regular doctor visits with local doctors at Inherited Metabolic Deceases Clinic. I am a bit old fashioned in tracking my daily protein, i simply use paper. I could not find an easy to use phone app for myself. I basically write down protein amounts for foods I eat either from memory (for more common and frequent foods) or from the food labels. If you had any specific questions, I can try and answer them for you and your daughter. 

I am not aware of anything related to GA and gene therapy. 

On the other hand, I had a question for you. Was it recently that you went to NIH and Dr Valle? i was seeing them many years ago, probably last time was in 2005 and I thought both programs were closed. Is that so or are they still seeing patients currently?