"Is that some kind of Pokéman?" you may ask, but no. It's a rare autoimmune disease.
Myasthenia gravis means "grave muscle weakness" and that's exactly what it causes. When Zach is in a flare, he can't walk or sometimes even stand; his head is too heavy to hold up; his eyelids fall half-shut; his speech slurs as if he's been drinking for a week straight; he can't chew solid food or swallow thin liquids; and he can't get a good breath without help from an external ventilator.
It's the reason for the stairlift in Zach and Ryan's house, his magnificent purple wheelchair, his stylish forearm crutches, his bedside bipap ventilator, and his five not-so-spa-like "vacations" at the hospital over the last two years.
It's also the reason Zach's friends and family and he are walking (okay, let's be honest, he'll be rolling, but it counts!) in the upcoming Myasthenia Gravis Foundation of America (MGFA) Portland MG Walk. On September 29, 2018, our team, "Motionally Challenged" will walk and roll, rain or shine, along with dozens of other teams of patients, friends, family members and caregivers, to raise money for the MGFA.
The MGFA is the only national volunteer health agency in the United States dedicated solely to the fight against myasthenia gravis. MGFA is committed to finding a cure for myasthenia gravis and closely related disorders, improving treatment options, and providing information and support to people with myasthenia gravis through research, education, community programs, and advocacy.
The MGFA has personally helped me in so many ways in the two and a half years since my diagnosis. I've learned coping strategies, met dozens of other patients like me, and formed lasting friendships through MGFA-sponsored support communities.
Until the mid-20th century, MG was often a death sentence, with a 70% mortality rate. Thanks to research supported in part by the MGFA and the Muscular Dystrophy Association, mortality has fallen to less than 5%, and new treatments are in the pipeline.
When someone you care about has a chronic, disabling illness, there is often little you can do besides offer sympathy, but there is an easy way you can help! Please make a pledge to help us reach our goal. Any little bit counts, even just a single dollar, and 75% of the proceeds will go directly into research. Here's a look at how the money we raise will be used.
If you're in the PNW and want to walk with us, we'd love to have you join our team, too!
It sounds cliché, but it's true: together we can make a difference!