Jessie Beatty
Forum Replies Created
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Shandra, thanks for your explanation. I have have wondered if some of the potential treatments might just be bandaids for symptoms.
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Matthew, Thank you, so glad to have this. I get good info from these forums and reading what other people are saying about a treatment keeps my sprits up. It seems it’s not just me that feels like we really have some hope. I just want that treatment NOW!! How long ago would you say the research for a treatment for FA has picked up speed? Has it been in the past 5 years? Or more like the past 1 or 2 years?
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My daughter gets sick this time every year. She just missed 7 days of school because of a cold/sinus infection. Thankfully we did not have to see her pediatrician this time. The worst part for her is not really the cold its the recovery from the cold. It takes weeks for her to get her strength/stamina back. I HATE sending her to school during this time. But I can’t keep her out for a month. I really wish there was a way to recover faster from illnesses.
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I have only known my daughters diagnosis since October 2018, but from all the news and the research I have seen, I truly feel they will find a cure or at the very least a treatment to slow progression. I am realist, I try to not get overly positive about all the news on drug developments but I truly feel a treatment is close.
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Since Etravine is already a safe prescribed med for HIV, will it take as long as a new med wold take to be approved for FA patients? Would Etravine for FA need to go through all the FDA steps for approval? I want to know how to get it for my daughter now. if I need to travel to another country to buy the med I will. Please let me know if anyone outside of the states is able to buy etravine without a prescription. Even if I need to have my daughter seen by a doc outside the states that will prescribe etravine for FA I will make it happen. I am so grateful to hear all of your experiences, it really helps!
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Can you tell me where you read the published results from the part 1 trial? I have researched this a ton but want to make sure what I have read already is the most up to date info. Do you know if Dr. Lynch is involved with this study? From what I have researched this drug sounds promising. I want to be positive about this study but I am also trying to not get my hopes up:) I am new to all this, my daughter she is 9 was just diagnosed in October.