- Last Post
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.
- 6 days, 18 hours ago
Welcome! This is a forum for members to introduce themselves, and share their LEMS stories. Also, moderators Dawn DeBois and Ashley Gregory introduce themselves. Feel free to reach out to them if you have any questions about the forums.
- 1 week, 3 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.
- 3 days, 21 hours 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.
- 1 day, 15 hours 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?
- 2 weeks, 4 days ago
Flash Briefings and Podcasts
This forum is where we post all of our flash briefings and podcasts. 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, 4 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.
- 5 months, 3 weeks ago
FIRDAPSE was the first LEMS specific treatment approved by the FDA in the United States. Join this forum to discuss the ins and outs of treatment and patient support programs through Catalyst Pathways. This forum is for discussion specific to FIRDAPSE.
- 1 month, 2 weeks ago
Formerly known as 3,4-DAP, given on a compassionate basis to approximately 200 patients in the US for 30 years, RUZURGI is now approved by the FDA for pediatric LEMS patients. This forum is specifically for RUZURGI discussion.
- 5 months 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 week, 4 days 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.
- 2 months, 4 weeks 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.
- 4 months 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.
- 6 days, 21 hours ago
- Coronavirus (COVID-19) and LEMS