Lambert-Eaton News Forums Forums General Questions and Topics Have you encountered barriers to your healthcare with LEMS?

  • Have you encountered barriers to your healthcare with LEMS?

    Posted by Price Wooldridge on June 17, 2023 at 1:40 pm

    While there haven’t been studies I can find on barriers to healthcare with LEMS, there have been with our sister disorder, generalized Myasthenia Gravis due to their higher patient population. I think it’s appropriate we can draw similar conclusions for Lambert-Eaton patients.

    Here’s an excellent study on the impact of social determinants of health on individuals and the implications for patient support programs in the NIH library. Read it HERE.

    Have you experienced roadblocks to your treatments or getting a diagnosis? Do you have financial concerns, or has your mental health been an issue?

    Ginny Boynton replied 1 year ago 2 Members · 3 Replies
  • 3 Replies
  • Ginny Boynton

    June 20, 2023 at 3:43 pm

    I have an enormous roadblock in my LEMS treatment. When I was on Ruzurgi, I didn’t need to use a walker or scooter, and used hiking sticks to walk on the Great Wall and Macchu Picchu. Now that I’m taking Firdapse, I’m having to use my walker just to get around my bathroom. This decrease in mobility has been very difficult physically as well as mentally since I know the treatment exists, but I can’t get it in our country.

    • Price Wooldridge

      June 21, 2023 at 9:46 am

      Ginny, I am continuing to follow up with Catalyst Pharmaceuticals on their progress with Ruzurgi manufacture and distribution. As soon as I can get an answer, I will post it. Thanks!

  • Ginny Boynton

    June 21, 2023 at 9:50 am

    Thank you Price.

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