Myasthenia Gravis News Forums Forums Additional Resources Looking For 10 Individuals to Share Their MG Story in a Community Spotlight for Myasthenia Gravis Awareness Month (June)

  • Looking For 10 Individuals to Share Their MG Story in a Community Spotlight for Myasthenia Gravis Awareness Month (June)

    Posted by jodi-enders on May 19, 2023 at 11:25 am

    Hey everyone! Myasthenia gravis awareness month is next month, June! We are looking for 10 individuals to share their stories with MG for a Community Spotlight feature on our website. Stories will be between 350 and 500 words. We are also looking for 3 photos to go along with your story. It would be great if at least one of these photos featured you. Please comment below if you would like to reserve one of the 10 slots available ūüôā

    I will be more than happy to help with editing for grammar or to help make recommendations for shortening if your word count is over.
    – Jodi, Team Member

    suzanne-e replied 5 months, 2 weeks ago 14 Members · 17 Replies
  • 17 Replies
  • Mark Harrington

    Member
    May 19, 2023 at 2:19 pm

    I’d like to be part of this. ¬†My dad had MG for the last fifteen years of his life and his birthday is June 20. ¬†It would be a cool way to honor the finest man I’ve ever known.

    • shalyce-anderson

      Member
      June 1, 2023 at 12:01 pm

      I would love to share my story if there’s still availability!!

  • deborah-white

    Member
    May 22, 2023 at 8:46 am

    Hi – I would like to share my story if you have a spot left. Thank you!

  • pearl-moffett

    Member
    May 22, 2023 at 8:48 am

    Hi,

    I would love to share my story if you still need someone. I didn’t know I had MG until one day I ended up in the hospital with a severe crisis.

    Thank you,

    Pearl

  • michael-adam-weinberg

    Member
    May 23, 2023 at 8:21 am

    I would welcome sharing my MG experience if you still seek contributors. Michael

  • david-s

    Member
    May 23, 2023 at 6:58 pm

    I too will add my experiences if you wish.

    S

  • andrea-b

    Member
    May 24, 2023 at 8:52 am

    I would welcome the opportunity to share my story living with refractory generalized MG if you are still looking for participants.

    Thank you, Andrea

  • suzanne-e

    Member
    May 24, 2023 at 2:30 pm

    Hi,

    I’m happy to share my story if you still need contributors. Along with MG, I’ve developed another autoimmune disorder, POTS / dysautonomia, gastrointestinal issues, and several chronic overlapping pain conditions.

    • jonathan-a

      Member
      June 9, 2023 at 2:32 pm

      Your stomach issues might be connected to your MG and MEDS.   When I landed in the first hospital, for some screwy reason, they started dumping the steroid PREDNISONE in me  .. and I was still undiagnosed about having MG.

      My two RARE DISEASE RESEARCH FOUNDATION REGISTRIES¬† (ALL-STRIPES¬† and PICNIC HEALTH)¬† … finally recover all my hospital papers.¬† ¬†I was given over 90 meds including the sedatives MORPHINE and FENTANYL.¬† The papers said I was also given PANTOPRAZOLENE (sp?)¬† ¬†… and it stated that ….¬† that was being dumped in me, as a prophylaxis (sp?) because¬† PREDNISONE and their other meds could make me get stomach issues and GERD,¬† which I never ever had.

      My new doctors say be¬† VERY CAREFUL, as you can get bad MED interactions¬† … such as for MG patients, the sleep aid MELATONIN can be dangerous if you are on CELLCEPT or other IMMUNO-SUPPRESSANT drugs¬† … as MELATONIN tries to revive an immune system that CELLCEPT is trying to suppress.

  • michael-morris

    Member
    May 24, 2023 at 3:23 pm

    I wrote my story to this website a few days ago so hope you find it and use it

     

    michael morris

  • jennifer-thompson

    Member
    May 24, 2023 at 3:31 pm

    I will add my story as well. I have overlap conditions as well.

  • oldmanFox

    Member
    May 25, 2023 at 3:36 pm

    I will be honored to share my story of this disease called MG. I’ve had it since 2010.

  • oldmanFox

    Member
    May 30, 2023 at 4:28 pm

    MYASTHENIA GRAVIS
    My Story

    I was always very active, outdoor oriented. Then in 2009 I was diagnosed with aggressive prostate cancer, had robotic prostate surgery, all within a month. I went back to teaching in August, got the H1N1 flu and was out for about a month. Then in December I developed pneumonia and was out most of that month.

    In January 2010 I woke up one morning, sat down to my cup of coffee. I started feeling weak and my arms and hands were trembling so bad I couldn’t hold my coffee cup. I would have to lean against the walls of the school hallways as I walked. I thought I had Parkinson’s and saw a neurologist.

    My neurologist diagnosed me with general MYASTHENIA GRAVIS and said I was very close to a MYASTHENIC CRISIS. He admitted me to the hospital, started me on a regime of 39 plasmapherisis treatments and meds. I had to retired from teaching that fall. Life has been very difficult but rewarding.i have been through one remission but it only lasted less than a year and the battle with MG has been a daily, even hourly struggle with muscle strength and breathing. I have learned that each breath is a gift from God and that my strength comes from Him.

    Family and friends won’t always understand how MYASTHENIA GRAVIS affects a person. They may call you lazy, bum, they may get angry and upset at you for not being able to do what you used to do. Your marriage or relationship may fail because of MG.

    The one thing that a person with MG has to remember is that YOUR HEALTH, PHYSICALLY, MENTALLY, EMOTIONALLY and SPIRITUALLY affects your disease. You MUST MAKE YOUR HEALTH YOUR PRIORITY!

  • brice-bowman

    Member
    June 1, 2023 at 8:18 am

    I would love to share my MG story, which began in February of 2020 after returning from a film shoot in Africa.

  • shalyce-anderson

    Member
    June 1, 2023 at 12:01 pm

    I would love to share my MG story. I’m 25, was diagnosed at 19.  Mg has changed my life dramatically but I was still able to get my masters degree in social work to help others!

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