New Forums Are a First for LEMS Patients
This has been a year of firsts for Lambert-Eaton myasthenic syndrome (LEMS) patients. Two medications approved by the U.S. Food and Drug Administration became commercially available for patients. It is nearly unheard of to have approvals for a single rare disease within months of each other. Patients now have treatment options that are proven to be effective for LEMS.
In June, I was asked to be a columnist for Lambert-Eaton News and “LEMme Tell Ya” was born. I never imagined writing a weekly column about my disease. In addition to my column, Lambert-Eaton News publishes updated information multiple times a week for LEMS patients, their families, and providers. There was little to no information about LEMS when I was diagnosed in 2016, and now there is a weekly newsletter!
As we wrap up 2019, Lambert-Eaton News is taking patient information one step further by launching the Lambert-Eaton News Forums. The soft launch is this week!
Historically, Facebook has been the only option for online “forums.” However, not all LEMS patients use Facebook, nor do all LEMS patients post there. The trending topics on a Facebook page may not interest a patient. Having to scroll through multiple posts to find a topic is tedious at best.
Patient forums offer a different type of user experience. Patients will be able to participate in the topic areas of choice without a lot of scrolling or searching.
Here are the subject areas on the Lambert-Eaton News Forums:
- 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 long journey and being told that you have something that is ultra-rare is scary. Join members to discuss your diagnosis, what it means, and the next steps.
- Autoimmune LEMS: For those of you who do 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 it all? Does diet help? What do we do next?
- The Big C: In about 50 percent of LEMS cases, cancer is the underlying trigger. This forum is for those of you who have had cancer as the cause of your LEMS. If you are going through cancer treatment or have successfully completed it, this little corner of the web is yours.
- Firdapse: Firdapse (amifampridine) 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 discussions specific to Firdapse.
- Ruzurgi: Formerly known as 3,4-DAP, and given on a compassionate basis to approximately 200 patients in the United States for 30 years, Ruzurgi (amifampridine) is now approved by the FDA for pediatric LEMS patients. This forum is specifically for Ruzurgi discussion.
- IVIG and plasmapheresis: Immunomodulation is an option that many LEMS patients choose over immunosuppression. This forum is the space for patients to share experiences with intravenous immunoglobulin and plasmapheresis therapies and how they have managed the treatment schedules.
- Immunosuppression: 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 experience with immunosuppression and how it has benefited your LEMS journey.
- Family forum: LEMS affects the patient’s family as well as the patient. Consider this your space to network, share experiences, and support being a source of strength for your loved one with LEMS.
- In the news: Our little-known rare disease has been in the news a lot in the past year. This forum is the space to share articles and stimulating discussion for those patients who want to delve into such topics.
I will moderate the forums with another LEMS patient who will start in January. We look forward to sharing conversation and support for all LEMS patients. Our soft launch this week is just prior to BioNews Services closing for the holidays. When BioNews reopens Jan. 2, we will be ready to engage in a type of patient conversation that hasn’t been available elsewhere.
We hope you will join us in the Lambert-Eaton News Forums.
Note: Lambert-Eaton News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lambert-Eaton News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia.