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  Having LEMS, Do You Feel the Disorder Is Being Neglected?

  Posted by Price Wooldridge on January 26, 2022 at 1:00 pm

  

  In a discussion today with another rare disease patient with another disorder, we started talking about being left out when it comes to drug trials and research. Because Lambert-Eaton is so rare, it’s my impression that we take a back seat to more visible disorders with larger patient populations. For instance, doctors know about myasthenia gravis. There is front-line research and trials going on for MG patients. LEMS, to me, is like the stepchild who gets little attention.

  The person I was visiting with regularly checks clinical trials at https://clinicaltrials.gov/.
  There are large lists of trials for MG, MS, and other more visible disorders. I couldn’t find anything right now for LEMS.

  When I see and record Flash Briefings for MS and SMA I have no problem finding articles on research studies and trials. On some level, it makes me a bit angry. I definitely feel left out and neglected. How do you feel?

  Price Wooldridge replied 2 years, 3 months ago 0 Member · 0 Replies

  • Chronic Illness
  • clinical trials
  • coping with lems
  • Lambert- Eaton Myasthenic Syndrome
  • LEMS
  • lems research
  • Research
  • studies
  • treatment
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