When it comes to rare, assume nothing
Greg Josephs
State: Virginia
Congressional District: VA10
Diseases
Blood Disease, Bone / Muscle Disease, Immune Disease, Mental Health, Neurological Disease
Issues and Challenges
Greg Josephs has encountered: Access to Expert Providers, Rare / Underserved Disease, Invisible Illness, Medical Discrimination
My Story
Twenty-three years ago, I was strangely unable to perform suction - like, drinking from straws was something I couldn’t do. I also started to slur like a drunk.
I have a rare disease called Myasthenia Gravis (MG). I’ve learned how to deal with my rare disease. I have it, it does not have me. But, I’m not in the clear.
When I see a street curb:
Pre-MG, well, no problem! Probably for you too.
But now, my brain talks to my nerves and says, “Muscles, tell your feet to step up.” But because of MG, my feet never get the message. So, I stumble. But this happens everywhere my nerves talk to my muscles. Feet, Legs. Hands, arms. And it is not just coordination. My muscles for talking and swallowing are also affected (thus the slurring and problem with suction).
How have I treated my MG?
I’ve tried four different medications, and now IVIG. None have worked totally, but hope springs eternal. These treatments are as expensive as MG is rare.
Fortunately, my insurance coverage has paid for most. But not on time. I’ve jumped through hoops, some sensical, some nonsense. Through it all, rather than lose heart, I’ve adopted Ghandi’s words: “The best way to find yourself is to lose yourself in the service of others.”
Now, what can you do?
First, please assume nothing. Just because someone stumbles does not mean they had too many martinis. Offer a hand.
Second, if you are a health professional, assume nothing. One symptom may reveal something or nothing. Rare diseases affect 30 million people in the US. Or 300 million of the world’s people. And 90% have no approved treatment.
Third, that last figure is chilling. MG is fortunate to have some treatment options – you may have seen TV ads. I’ve tried four of them, but for me, none have worked; hopefully the fifth will help.
To sum it all, first, assume nothing. Second, a symptom is not always what it seems. A sore throat may not be strep but a bruised esophagus. Third, please tip your health professional - they are the best 😉
My Motivation and Inspiration
You
Share This Story
Get the most from every Story
Find A Compelling Patient Story
Share it on social media.
Share Your Story On Our Network
Share your insights, challenges and what keeps you going.