Jessica Jones



Year of Birth








Short Bio

When I got extremely ill in 2009, no one considered a rare disease diagnosis…I live in rural Alabama, and even now,  most medical personnel haven’t even heard of LEMS.

I spent 3 years of hovering just this side of death, being kept alive by high dose steroids and being carted all over the country (and even Mexico) seeking answers. Someone at Shands got close, and Emory made a real effort,  but the Mayo Clinic in Rochester, MN ended up saving my life.  I traveled up there with my parents and we stayed for 6 weeks of diagnostic testing,  until a diagnosis of Lambert Eaton was made.

At the time, there was no standard of care for a LEMS patient without cancer to treat, so we discussed several options and put together a mix of different drug protocols, which ended up working well.

After 2 more years of balancing and stabilizing medications as well as intense physical therapy,  I returned to work full time.

I am so grateful for every day that I can get out of bed and live.  My journey has been long and rocky,  and I’m glad I found this forum… it’s difficult to share with people who just can’t understand with ‘Living with LEMS’ means.

A LEMS diagnosis can feel isolating and living with this condition is tough.  Feel free to reach out…I’m happy to speak with anyone who needs a little extra support anytime.

How did you hear about us?


How long have you or the person that you are caring for had LEM?

12 years

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