Can, or should, you get a massage if you have myasthenia gravis (MG)? Will the use of oils or lotions cause a symptom flare? I see these two questions floating around the interwebs frequently. I’m lucky in that my Veterans Affairs (VA) benefits include this thing called…
On Oct. 10, 1935, the classic of American theater “Porgy and Bess” opened on Broadway. The show was not an instant success. Its first run ended after only 124 performances. Despite this, it went on to become an iconic part of American theater. “Porgy and Bess” demonstrates how…
Deborah skydives over Longmont, Colorado. (Photos courtesy of Deborah White) This is Deborah White’s story: After several months of sporadic double vision, I started to experience drooping eyelids while on a business trip. A concerned co-worker took me to the emergency room where the physician recommended that I…
Descartes-08, an investigational RNA-based CAR T-cell therapy (rCAR-T), safely eased disease symptoms for up to nine months after treatment among 14 adults with generalized myasthenia gravis (gMG) taking part in a Phase 1b/2a clinical trial. The open-label MG-001 trial (NCT04146051), now a recruiting Phase 2b study, is the…
(Photos courtesy of Jennifer Thompson) This is Jennifer Thompson’s story: When I signed up to share a specific way in which myasthenia gravis (MG) has affected me, I had to really pause and pray. Wow! Living with MG takes a toll in so many different ways, it…
The U.S. Food and Drug Administration (FDA) has approved rozanolixizumab, under the brand name Rystiggo, to treat adults with generalized myasthenia gravis (gMG) who have antibodies against the acetylcholine receptor (AChR) or muscle-specific tyrosine kinase (MuSK) proteins. Rystiggo is now the only FDA-approved therapy for patients with anti-AChR…
(Photo courtesy of Kathi Timothy) This is Kathi Timothy’s story: As a child, I remember pleading with my mother to please believe me. Believe me that I will clean my room after I go to a friend’s house. Believe me that I really did study. Believe me. Decades later,…
A branch of the European Medicines Agency (EMA) recommended that the approval of Soliris (eculizumab) be expanded to include children and adolescents, ages 6 to 17, with generalized myasthenia gravis (gMG) who are positive for antibodies targeting the acetylcholine receptor (AChR) — the most common type of MG-driving…
Hey, there! How’s the weather by you? Yeah, it’s a scorcher here, too! No, this isn’t just small talk. If you look at forecast maps across the country right now, there are some crazy summer storms brewing. The temperatures have been above average across the nation (at least according to…
(Photo courtesy of Andrea Barlass) This is Andrea Barlass’ story: Living with myasthenia gravis (MG) has been interesting, for the lack of a better word. Despite the amount of research I did after I was diagnosed, no amount of information could have prepared me for how…
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