• Can anyone give me the names/locations of doctors that are prescribing Etravirine for FA? Who do you see that is willing to give this a try?? PLEASE, any help is DEEPLY appreciated! Thank you!

  • Amber posted a new activity comment 1 year, 4 months ago

    Honestly, I don’t have a clue? I know that sounds silly, but we weren’t given a manual when given this diagnosis…? There is no book, “What to expect when you have FA?” I feel lost most days. She feels “this isn’t fair, why me?” The way this disease was explained to us, I thought we would have more time before new progressions started… It…[Read more]

  • Amber replied to the topic Age of Diagnosis in the forum Living with FA 1 year, 6 months ago

    My daughter was 9 when the OFFICIAL diagnosis was made of FA, she will be 11 in December. However, my husband and I knew from the age of 2 something wasn’t quite right with her gross motor skills. She was #5 of our 6 children. She had been slightly delayed with learning to crawl, pull up to stand, and learning to walk. Her pediatrician assured us…[Read more]

    • Amber, I have to commend you. Your love for your daughter shines through in your writing. I often think that, even though having FA is fraught with difficulty, being the parent of an FA patient has its own set of hardships. Thanks for being a good mom. How is your daughter these days?

    • Thank you for sharing your story! I know that a lot of other parents can relate

  • Amber posted a new activity comment 1 year, 6 months ago

    Thank you!

      • Honestly, I don’t have a clue? I know that sounds silly, but we weren’t given a manual when given this diagnosis…? There is no book, “What to expect when you have FA?” I feel lost most days. She feels “this isn’t fair, why me?” The way this disease was explained to us, I thought we would have more time before new progressions started… It…

        [Read more]

    • Amber changed their profile picture 1 year, 6 months ago

    • I was just wondering, what’s the youngest FAer anyone may know of that is trying/has tried Etravirine? I’ve read the previous posts and can’t help but become tearful with all the HOPE your experiences bring.

    • Amber became a registered member 1 year, 6 months ago

      • Hey Amber,
        Thanks for joining the FA Forums! I’m grateful that you signed up, because one of the most difficult part of FA to deal with is how rare it is — not many people seem to understand! So you are helping us create a place where people affected by FA can share advice and information directly with one another. You’re an important part of ou…[Read more]