Lambert-Eaton Myasthenic Syndrome

Join the Conversation on
Lambert-Eaton Myasthenic Syndrome
313 people
0 stories
45 posts
About Lambert-Eaton Myasthenic Syndrome
Explore Our Newsletters
What's New in Lambert-Eaton Myasthenic Syndrome
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

What advice do you have for someone searching for a rare disease diagnosis?

Between managing symptoms, juggling doctors’ appointments, and trying to find a name for what you’re experiencing, the journey to a rare disease diagnosis can be a bumpy one. That’s why it helps to have a community that “gets it” in your corner.

If you’ve been through the rare disease diagnostic process before, what advice do you have for someone just starting their search for answers? Do you have any tips for communicating with health care providers?

And remember, no matter where you are in your rare disease journey, you’re your own best health advocate. We’re cheering you on!

✏️ P.S. We’re creating a story with one of our partners, Catalyst, to raise awareness around late-onset rare disease. We may use your answer in an upcoming story on The Mighty.

💡 If you’re looking for more resources on navigating life with a rare disease, check out Catalyst’s new program at Many Faces of LEMS - lemsaware

#RareDisease #LambertEatonMyasthenicSyndrome #MyastheniaGravis #LungCancer #SCLC #CheckInWithMe #Spoonie #MentalHealth #Caregiving #MuscularDystrophy #IntravenousImmunoglobulin

Many Faces of LEMS - lemsaware

16 reactions 8 comments
Post

I'm new here!

Hi, my name is 24thoctober. I'm here because I would like to hear what kind of symptoms LEMS causes and how is it diagnosed.

#MightyTogether

1 reaction 2 comments
Post

I'm new here!

Hi, my name is Tleyva. I'm here because I have recently been diagnosed with LEMS and am interested in finding others who have the same condition. Knowledge is power!

#MightyTogether #LambertEatonMyasthenicSyndrome

3 reactions
Post

I'm new here!

Hi, my name is Nicksoccer21. I'm here because
I have had seroneg MG x24 yrs & am being worked up for LEMS now. Legs def weaker.#MightyTogether #MyastheniaGravis

2 reactions 1 comment