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  • Writers with FA

    Posted by matt-lafleur on January 28, 2019 at 9:18 am

    If you enjoy writing, and you have something you can share here, please do so! Let us support your work! If you are a writer of any kind — whether a nonfiction writers, researcher, fiction writer, poet, internet blogger, etc. — and you also combat FA, please reply to this link with your writings themselves or provide us links to your works and let us support you!

    matt-lafleur replied 5 years, 2 months ago 2 Members · 2 Replies
  • 2 Replies
  • matt-lafleur

    Member
    January 28, 2019 at 9:24 am

    I’ve been interested in attempting to write since I was in fourth grade before I was even diagnosed. I’m lucky enough to have a weekly column where I get to write about FA: https://friedreichsataxianews.com/category/little-victories-a-column-by-matthew-lafleur/

    I know that @gunnhild, @frankie-perazzola, and @curefa-now all write. Can you provide us a link to your writing and say a little about it?

  • gunnhild

    Member
    January 28, 2019 at 12:04 pm

    Thank you for mentioning me although I dont see myself as a writer really. I just read your last article. Now that is writing! 🙂

    I started my blog having a wish to share some practical tips about managing FA. My education is physiotherapist so I thought it could benefit others.

    In 2012-2013 my depression, fatigue and anxiety increased very fast. Never had any of this problems before. Blogging got more rare. It was hard to find motivation to do anything at all. Then I started interferon gamma in august 2013 which eventually eliminated these three symptoms.I feel very æucky that I got these benefits. The effects of this drug seems to very different for every person that tries. So this kind of rebooted my life. I got very enthusiastic about sharing that story with “the world”. I got a lot of interest around that. The next few years I started workin like crazy. Renewed energy and all, so the blogging more or less stopped. Interferon Gamma failed the in the American study, unfortunately. It might still have a chance? But now I feel a little bit like “a cheater on FA”. It is hard to keep sharing my story when I know that most people in the world dont have the opportunity to try interferon gamma at this moment.

    If I had time to renew my blog I think I would focus on the “normal”. How I live a “normal” life even if I have a disability. To motivate people to study, work, find love and so on.

    Here is a link;
    http://extremeliving.no

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