- Last Post
Welcome! This is a forum for members to introduce themselves, and share their LEMS stories. Also, moderators Ashley Gregory and Price Wooldridge introduce themselves. Feel free to reach out to them if you have any questions about the forums.
- 1 week, 2 days ago
LEMS Community Zoom Socials
Each month, our LEMS forum community does virtual socials via Zoom. These are opportunities to meet other people who have LEMS, as well as parents and caregivers. Follow this forum for meeting dates and times.
- 3 weeks, 4 days ago
Diagnosed- What now?
This forum is the first place to go after you hear the words “You have LEMS.” We understand it has been a very long journey and being told that you have something that is ultra-rare is very scary. Join members to discuss your diagnosis, what it means, and next steps.
- 1 month, 1 week ago
General Questions and Topics
This forum is for general questions and discussion topics related to living with LEMS. Patients, caregivers, and other community members are welcome to post here.
- 9 hours, 11 minutes ago
Living With LEMS
This forum is for discussing ways to cope with LEMS and live productive lives. Please feel free to ask questions and share tips and experiences.
- 2 hours, 43 minutes ago
For those who have been found to not have cancer as the underlying cause of your LEMS, this is the forum for you. Many of us have multiple autoimmune diseases as well as LEMS. How do we juggle all of it? Does diet help? What are the next steps?
- 1 month, 3 weeks ago
Coronavirus (COVID-19) and LEMS
This forum is for discussing the Coronavirus pandemic, and how it coincides with Lambert-Eaton Myasthenic Syndrome. Ask questions, share tips for self-isolation, etc. Please note that Lambert-Eaton News Today is not a resource for medical advice. However, we can share news and patient and caregiver perspectives.
- 2 hours, 49 minutes ago
Our flash briefings are audio recordings of our news and perspective pieces. Members can access these by enabling a skill on any Amazon Alexa device. We also post all of our audio content on SoundCloud, Spotify, and Apple Music.
- 1 month, 2 weeks ago
The Big C
In roughly 50% of LEMS cases, cancer has been found to be the underlying trigger. This forum is for those of you who have had cancer as the cause to your LEMS. If you are currently going through cancer treatment or have successfully completed your cancer treatment, this little corner of the web.
- 6 days, 13 hours ago
Amifampridine (Firdapse and Ruzurgi)
Firdapse (amifampridine) is the first LEMS-specific treatment approved by the FDA in the United States for patients 17 and older. Ruzurgi (amifampridine) is the first treatment for patients ages 6 to 16. Join this forum to discuss the ins and outs of treatment and patient support programs.
- 1 month ago
IVIg and Plasmapheresis
Immunomodulation is an option that many LEMS patients opt for over immunosuppression. This forum is the space to share your experiences with IVIg and Plasmapheresis therapies: how they have responded to the treatment and managed the treatment schedules in their life with LEMS.
- 1 month, 2 weeks ago
There are various forms of immunosuppression that many LEMS patients are on to stop the antibody attack on the calcium channels. This is your forum to share your experiences on the various immunosuppressants and how it has benefited your LEMS journey.
- 9 hours, 25 minutes ago
LEMS does not just affect the patient, it affects the patient’s family as well. Consider the Family Forum your space to network and share experiences and support being a source of strength for your loved one with LEMS.
- 10 months, 2 weeks ago
In the News
Our little known rare disease has been in the news a lot in the last year. This forum is the space to share articles and stimulating discussion for those patients who want to delve into such topics.
- 3 months ago