Five years ago, Leah Gaitan-Diaz’s life changed when she was diagnosed with myasthenia gravis. But with this condition comes a lack of understanding or confusion over what it entails. In her discussion with BrandpointContent, Leah shares her story, provides advice for newly-diagnosed patients, and explains what life with myasthenia gravis is really like.
Myasthenia Gravis (MG)
Myasthenia gravis is an aptly named disorder; it translates roughly to “grave muscle weakness.” This autoimmune and neuromuscular disorder usually occurs when the body mistakenly attacks itself. In this case, the immune system responds to proteins that help nerves and muscle cells communicate. When damaged, the muscles and brain experience difficulty communicating. However, RAPSN, CHAT, DOK7, COLQ, or CHRNE gene mutations cause congenital myasthenia gravis, a rare subset.
There are two other forms of myasthenia gravis:
- Transient neonatal, which begins in infancy and ends a few weeks later.
- Juvenile, which begins in adolescence and occurs in certain periods throughout life.
Symptoms get worse with activity and may progress over time. These include:
- Drooping eyelids and double vision
- Trouble chewing and swallowing
- Muscle weakness and fatigue
- Slurred speech
- Shortness of breath
- Changes in movement, such as walking
- Weakness in the neck, arms, and legs
Most individuals will not develop serious or life-threatening symptoms. However, 10% of patients do experience chest weakness and respiratory complications that can be fatal without treatment. Learn more about myasthenia gravis.
Leah’s Story
Leah’s symptoms first appeared when she was 40. Around her menstrual cycle, she became extremely fatigued to the point where it interrupted her life. She would stay in bed until 1pm, struggling to get up. But her doctors didn’t believe it was a problem. Now, Leah describes her flare-ups as feeling:
“like when you’re drunk, but without the alcohol. So you can’t see straight, you can’t walk straight, you can’t talk. You’re wobbly.”
As she learned more about the condition, Leah became aware of how much misinformation there was. Ultimately, she left her position as a store manager and is now on disability. She tried treatments like steroids, CellCept, and IVIg. Sometimes, they left her feeling energized. Other times, she experienced severe allergic reactions or extreme exhaustion.
But Leah has committed her time to spreading awareness and raising education. This is incredibly important, as many in the rare disease community know that grappling with their conditions can lead to social isolation and difficulty maintaining relationships. She wants to remind people that they will learn, grow, and share their experiences with others to create a more informed and inclusive world.
For those with myasthenia gravis, whether newly diagnosed or not, there is also a platform to share your stories and connect with other patients: MG United. This platform offers resources, information, events, videos, and more. Recently, MG United covered Leah’s story as well. One last piece of advice she offered?:
Get to know your body. Listen to it. That means if you’re tired, take a nap. If you don’t feel up to taking a shower or putting away laundry, that stuff can wait. It’s okay.
