Living With Myasthenia Gravis

Greg Josephs, Myasthenia Gravis Foundation of America (MGFA) Volunteer Ambassador and patient with myasthenia gravis (MG), discusses living with a rare disease and valuable resources available to patients.

MG is a rare chronic autoimmune neuromuscular disease characterized by weakness of the skeletal muscles. Common symptoms include weakness of the muscles that control:

- Eye and eyelid
- Facial expressions
- Chewing
- Talking
- Swallowing

Weakness tends to increase during periods of activity and improve after periods of rest. The condition results from a defect in the transmission of nerve impulses to muscles, which is due to the presence of antibodies against acetylcholine. The exact reason this occurs is not known.

Mr. Josephs describes his most burdensome symptom as slurred speech. This symptom ultimately led to his MG diagnosis. Typical of rare diseases, Mr. Josephs’ diagnosis was an obstacle, taking time and a good deal of advocating for himself to healthcare professionals.

Mr. Josephs wants physicians to know that diagnosing rare diseases takes a great deal of humility. It is important to recognize that symptoms can vary greatly and ruling out other diseases is crucial to a proper diagnosis. Patients want the correct diagnosis and treatment plan, even if that may take a little longer.

Chapters:
Intro 00:00
Myasthenia Gravis Diagnosis 1:04
Most Burdensome Symptoms 2:16
Advice for Recently Diagnosed Patients 3:21
Importance of Patient Meetings 6:54
What Should Physicians Know? 8:08
MGFA Resources 9:12
Being an Advocate 10:33