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Poll Question: How many years after diagnosis before you met another LEMS patient in real life?
This past weekend I had the opportunity to travel to Boston for a LEMS patient meeting. More to come about that trip in my Rare Disease Day column (will be published on Wednesday, February 26th). For some of those patients, it was the first time they had ever met another LEMS patient. My blog brought about the opportunity to meet other LEMS patients within the first year of my diagnosis; and those patients are now some of my very best friends.
How about you? How many months or years after your diagnosis before you met another LEMS patient in real life? Or, have you never?
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11 Replies
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I was diagnosed June of 2018 and started on Firdapse April of 2019. I attended a Catalyst meeting in NYC in July of 2019 and had the privilege of meeting 2 patients and the mother of a patient. It was so enlightening to hear about their experiences and treatments. In addition the presenters for Catalyst provided awesome information. It was a great opportunity to meet fellow LEMS patients and Catalyst representatives.
In November I had the opportunity to meet my 3rd LEMS patient, I hope I have the opportunity to meet more in the future.
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Mary Ann,
I’m so glad you had such a great meeting with other patients and the mother of a patient. There is a feeling like “coming home” when you meet others that GET IT. And, the passing of information is so good.
Catalyst does a fabulous job of making sure patients have in person connections. Those friendships have held me up while much of the rest of the world has gotten too busy to remember what I’m going through. I absolutely hope you get to meet other LEMS patients soon! Please put the Global Genes Rare Disease Patient Advocacy Summit on your calendar. There’s always LEMS patients that attend and there are some scholarship opportunities available.
I look forward to meeting you one day! Hopefully sooner than later!
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Only met online like here. Still haven’t met another LEMS sufferer face/ 1:1 yet ! Crazy….
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RDT, I didn’t meet another LEMS patient for about 7 months after diagnosis, until I got invited to participate in a Catalyst Pharmaceuticals advisory group. I must say, it was revelatory to meet other LEMS patients then! Meeting others and sharing similar experiences feels so good, so I hope you will get the opportunity sometime ahead. If you see an opportunity, don’t let it pass by.
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I was diagnosed in 2018 and so far have met no one with LEMS. I live in Ireland and don’t even know if there’s anyone else in the country with it. The Doctors here have not come across anyone else with it. That’s why this forum is so beneficial.
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Acting as moderator on the Forum, we’re very glad to have you. Both Ashley and I have been diagnosed and treated for LEMS for several years. Let us know if we can help. Statistically, the frequency of LEMS has been calculated to be approximately 1 in 300,000. I checked and Ireland’s population is just near 5,000,000. Doing the math this estimates 16 people with LEMS. Of course many could be misdiagnosed, or not diagnosed at all. So it would be very easy to NOT know another patient. From personal experience, I can tell you how wonderful it is to meet other LEMS patients in person. I hope you’ll keep looking!
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I was diagnosed in January 2020. I have just started ruzurgi. I have never met up with another LEMS person. My specialist has never had a LEMS patient either. I am from Vancouver island in Canada. I would welcome any contact. Your web site has been invaluable.
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Hi Joanne, I’m Price, a temporary moderator on the forum, and welcome! Dawn and Ashley will be here to answer your questions, and we all have LEMS and been diagnosed for some time. I hang around here too. Welcome!
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Hi @joanneevans,
So far, I have actually only met one person with LEMS in person. Glad we are able to help you and provide some valuable information! Let me know if you have any questions!
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<p style=”text-align: left;”>After 8 years of symptoms and many doctors I was finally diagnosed with LEMs Dec 2019. I have yet to meet any other amazing LEMs patients!</p>
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Hi Tescha. Your post here has formatting information imbedded in the text. Please do not cut and paste from other software to post. Always post from within the forum online. Thanks!
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