At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases within the next decade. A leader in the field of genetic diagnostics, Centogene used the June 22 event to present its strategic priorities, outlining its plans to speed the discovery…
When I was diagnosed with myasthenia gravis, I did what most people would do: I Googled my new rare disease and came to the instant conclusion that I would die within the next 48 hours. Dramatic, yes, but Google searches rarely lead to encouraging news. Before my diagnosis, I…
Myasthenia Gravis (MG) Awareness Month may be wrapping up, but advocate Glenda Thomas is just getting started. Diagnosed at age 60 with the rare disease form known as MuSK MG, which attacks the muscle-specific tyrosine kinase receptors and can prevent muscles from contracting, Thomas now spends her waking hours…
I am currently composing this column six hours out from my transsternal thymectomy. Five mishaps leading up to the surgery have gone wrong on the scheduling side, and then the COVID-19 office lost my test. I have been relatively happy leading up to this, but it seems everything…
Time has been my greatest teacher. She has taught me patience, resilience, and true commitment. She has taught me so many things I would love to share with my younger self. If my myasthenia gravis diagnosis has taught me anything, it’s to appreciate movement. Go for every run I can.
Videonystagmography, a video-tracking system used to investigate balance disorders, can also detect eye muscle fatigue and recovery in myasthenia gravis (MG) patients, making it a potentially useful diagnostic test for MG, a study reported. The study, “A Novel Diagnostic Method for Myasthenia Gravis,” was published in…
Some events in life are like a door hinge: They are so transformational that they cause you to swing entirely in a different direction. For example, years before I began dealing with the first symptoms of myasthenia gravis (MG), I suffered the loss of my father. That was the first…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes — are assigned, updated, and revised in the U.S. health information system, the EveryLife Foundation for Rare Diseases is presenting a first-of-its-kind resource guide. The foundation created the…
Treatment with immunosuppressant medications can delay disease progression in patients with ocular myasthenia gravis, which affects only eye muscles, to a more generalized form in which other muscles are affected, a study has found. The findings also showed that thymus gland abnormalities, as well as irregular results on facial…
Snowflakes never meant much to me. As a kid, I would catch them in my mouth as they fell from the sky and cut their shapes out of construction paper. Now, after my myasthenia gravis (MG) diagnosis, I look at snowflakes with a newfound admiration and wonder. A miraculous…
Get regular updates to your inbox.
