• I go once year to CHOP in Philly to see Dr. Lynch. In addition, I see the cardiologist every other year.

    I was told only once a year is fine. Do you think it should be more @frankie-perazzola? What do you go over at each visit?

  • @frankie-perazzola I like the idea of making a list. 8t all depends on my fatigue levels are for the day, so this will help keep me organized if I cant get everything done in one day!

  • @frankie-perazzola Happy New Year as well! Your tradition sounds like a fun and relaxing time too! Yes, I know it is hard but try not to worry about the future and be be in the present!

  • @frankie-perazzola wine always does the trick or CBD gummies lol

  • @frankie-perazzola I don’t wear compression socks. But do you think they will help with purple feet associated with FA? This happens to me, especially in the winter.

  • @frankie-perazzola I’m so glad we officially got to meet in person today!

  • @frankie-perazzola for work, I do all of the above- wake up earlier, lay out your clothes and shower the night before to give myself extra sleep time and time to make sure I am not rushing getting ready and eating breakfast. I feel as though this helps me!

  • @frankie-perazzola my husband also suffers a rare disease, called Fabry Disease. He thankfully has treatment and takes an oral medicine every other day. But between Fabry and Friedreich’s Ataxia, be both have become stronger for one another and understand each other better because we go through some of the same symptoms.

  • @frankie-perazzola, this is a great insight! I’ve thought about this a little, but never really put it together. My goal is to be in my standing frame while watching Netflix. Hopefully lengthening from an episode of The Office to House of Cards to a movie!

    But yes, Netflix is tyically a time for being a bum. I hope to change that.

  • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

    Hey Rachael,
    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]

  • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

    Hey Heather,
    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]

    • Thanks for letting me join! I have been diagnosed with FA since 2013 when I was 49, symptoms started in my 40’s so very late on-set compared to most. I am still able to walk with the use of a rollator but things are getting more difficult and taking longer to do. I have taken part in a small trial of the drug G-CSF to see if it will have any…

      [Read more]

      • Wow, I’ve never heard of that drug. Please keep us updated!
          • Will do. If you look on the FARA research pipeline chart it is right at the bottom under stem cell therapy. I see Dr. Wilkins as an outpatient too so get to know what is happening. FARA along with Ataxia UK provided funding for the small study, but if it is to go further then a bigger budget will be needed so may take a while.
      • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

        HeyTania,
        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 our c…[Read more]

        • Thanks Matt,
          Thank you for having me. My 17 yo daughter has just been diagnosed with FA so we are new to all this. I’m not the type of person who sits back though so I have plans to get the FA word out as much as I can in our community and raise funds for research etc.

          Thank you for creating this space it has been so helpful for us to get some i…

          [Read more]

          • Welcome Tania. It is awesome to hear you have a feisty spirit- your daughter needs that! Please let her know that if she joins the forums herself, or if she or you want, I can get her in touch with some FAers her age from all over the world!
            • Also Tania, sorry for missing this, but I didn’t make this forum! The company BioNews did and I am the lucky guy they let be one of the moderators!
          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Samuel,
            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]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Andy,
            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 our c…[Read more]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Christa,
            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]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Anne,
            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 our c…[Read more]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Mark,
            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 our c…[Read more]

            • Matt, thanks for allowing me to join. This is a very rare disease and I know of only one individual who has been confirmed to have it. I have been working in Gene Therapy for some time and we often concentrate our efforts on rare ” orphan diseases”. These forums allow others (myself) to better understand the daily obstacles encountered by people…

              [Read more]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Big brother,
            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]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Camila,
            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]

          • Matt Lafleur posted a new activity comment 8 months, 3 weeks ago

            Hey Danica,
            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]

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