From Family Planning to Cancer Screening: A Young Person’s Guide to Living with LEMS

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If you receive a Lambert-Eaton myasthenic syndrome (LEMS) diagnosis in your 30s-50s, you may question what this means for your future. Can you still have relationships, families, and kids? Will you need to make any career concessions? And with LEMS’ significant relationship with small cell lung cancer, how can you best manage your health?

Although this can be overwhelming, you are not alone and your experience is valid. Patient Worthy’s helpful guide can inform your journey and provide more insight into family planning, career maintenance, and disease management.

What is Lambert-Eaton Myasthenic Syndrome (LEMS)?

Lambert-Eaton myasthenic syndrome is a rare neuromuscular disease that affects how your nerves and muscles communicate. In LEMS, the body doesn’t produce enough acetylcholine, leading to muscle weakness. LEMS shares some similarities with myasthenia gravis (MG); in fact, MG is a common misdiagnosis. Symptoms may include:

  • Fatigue
  • Muscle pain
  • Weakness
  • Dry mouth and eyes
  • Blurred vision
  • Dizziness
  • Difficulty walking, chewing, speaking, swallowing, or lifting objects

There are no cures for LEMS, however, symptoms can be managed. Treatment options include:

  • Intravenous immunoglobulin (IVIG) therapy
  • Plasmapheresis
  • Cholinesterase inhibitors
  • Potassium channel blockers (such as Firdapse)
  • Occupational and physical therapy
  • Mental health support
  • Lifestyle changes.
A work from home position can help lessen the burden that a LEMS diagnosis may place on a person’s career.

Managing Relationships and Maintaining a Career with LEMS

With appropriate treatment, care, and management measures, you can still lead a fulfilling life with LEMS.

Prior case studies suggest that women with LEMS can have healthy pregnancies, though there is a small chance of the mother’s antibodies affecting the child. More frequent newborn screenings, and specialist care during pregnancy, can mitigate risks. If you have children prior to your diagnosis, developing a parenting plan with your partner—and learning where to step in and where to rest—can be helpful. Check out this episode of the LEMS Aware podcast in which a young father discusses how he parents with LEMS.

People with LEMS can also maintain careers, especially with the use of mobility aids, assistive technology, and company support. For those with severe symptoms, freelance and work-from-home roles might allow for more flexibility while reducing disease burden.

Finally, maintaining friendships can sometimes be difficult with LEMS, especially if you’re struggling with fatigue or mobility. Consider LEMS-friendly activities such as movie watch parties, virtual book clubs or museum visits. The Mighty offers more ideas and worksheets to bridge these conversations with friends. You can also turn to online support groups who can provide not only resources, but additional information and personal experience.

Interested in an opportunity to share your story related to Lambert-Eaton myasthenic syndrome (LEMS)? Click here to learn more.

Monitoring for Small Cell Lung Cancer

The most common comorbidity associated with LEMS is small cell lung cancer (SCLC). Doctors are still working to develop a better understanding of the relationship between LEMS and SCLC. SCLC precedes LEMS in around 50-70% of cases. The Mighty explains that:

“The calcium channels on SCLC are very similar to the calcium channels on neurons…[so] the body…accidentally attacks the calcium channels on the neurons too.”

In the younger-onset form of LEMS, cancer is not as common; this form is often considered to be more genetic or autoimmune-related. Despite this, individuals diagnosed with LEMS should undergo regular cancer screenings, which can aid in early detection and management. Chemotherapy, radiation, or immunotherapy may be instituted in your treatment regimen alongside LEMS-specific therapies.

You can find out more information about LEMS, including more articles and links to online resources over at Patient Worthy’s cornerstone on the condition.

Jessica Lynn

Jessica Lynn

Jessica Lynn has an educational background in writing and marketing. She firmly believes in the power of writing in amplifying voices, and looks forward to doing so for the rare disease community.

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