The uncharted territory of pregnancy and Lambert-Eaton

I vividly remember trips to the library as a young girl when a research paper was due. Once there, I’d trudge to the reference section and spend hours hunting for answers and information from encyclopedias, periodic journals, and various books. Once I gathered the information, I’d type up my research paper (on a typewriter) and turn it in to the teacher in one of those handy plastic pocket folders.

Nowadays, we live with information at our fingertips. In fact, we have access to more of it than any other generation has known. My kids’ school assignments are no longer traditional research papers; instead, they show what they’ve learned by formatting the information into narrated PowerPoint presentations and podcasts posted online.

Information is a good thing, and it seems we’re overloaded with it. Those of us living with a rare disease, however, often go without much-needed information simply because it doesn’t yet exist. There are still vast arrays of facts needed to understand rare diseases, and specifically Lambert-Eaton myasthenic syndrome (LEMS).

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The pregnancy question

One area that particularly concerns me is how LEMS affects pregnancy. As the mother of Grace, a teenager with LEMS, I wonder how her disease will affect her ability to have children. Will it prevent her from getting pregnant? If she were to get pregnant, would her medication be harmful to the baby? Is the baby likely to develop LEMS?

Unfortunately, we don’t have the answers to these questions, for multiple reasons. First among them is that LEMS is extremely rare in people under age 40. My daughter’s diagnosis of LEMS at age 15 is rare, to say the least. Therefore, there seems to be no data on women of childbearing years with LEMS and how it affects pregnancies.

As of 2020, only two documented cases existed of women giving birth after a LEMS diagnosis. Fortunately, neither of the pregnancies and births seemed to have LEMS-related problems. In addition, neither child showed symptoms of the disease.

We must continue to make strides in this research for the benefit of those who come after us. The Firdapse Pregnancy Registry, for instance, is attempting to collect data to share with the U.S. Food and Drug Administration. It’s but one piece of the puzzle, though.

For Grace and others who share her treatment protocol, Firdapse (amifampridine) is just one of the medications she takes daily. Grace also takes Mestinon (pyridostigmine) and the immune suppressant Imuran (azathioprine) multiple times a day. In addition, she receives Rituxan (rituximab) infusions every six months, which further suppresses her immune system. How might these treatments affect her ability to have children safely?

One thing we do have going for us is that the LEMS community comes together through forums and Facebook groups, affording us the opportunity to ask questions and glean knowledge from one another’s experiences.

My hope is that, as more and more data are collected, we can ensure safe pregnancies for any woman with LEMS who desires a child.

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, and are intended to spark discussion about issues pertaining to Lambert-Eaton myasthenia syndrome.