Hopefully, you’re now well underway in implementing your MG Awareness Month activities.
While we’re talking about awareness, I thought perhaps we should delve into the reasons why raising awareness for Myasthenia Gravis is so important. There are plenty of reasons, but I’ll share with you the two that are most important to me.
The first is that raising awareness for MG can mean the difference between someone suffering in silence with symptoms and not knowing what’s causing them, and getting diagnosed with MG and starting effective treatment. Let me explain.
Imagine feeling exhausted after brushing your teeth or struggling to keep your eyes open while reading a book or getting so tired that you have to get off your legs after walking only short distances. Imagine not knowing what’s causing all these problems and just having to live with them. That’s what many people do who may have Myasthenia Gravis, but don’t know it. They just live with it until it becomes so severe that it affects their attitude, their health, and their life.
Many of you with Myasthenia Gravis experienced your own journey before getting diagnosed. At first, symptoms made you feel uncomfortable. Maybe you chocked them up to stress, overworking, or aging. You probably didn’t have a clue what MG was, after all, it’s not one of the “popular” diseases. You were probably a bit embarrassed by your symptoms, so you hid them….until you couldn’t hide them anymore. Eventually you saw a doctor, maybe even a few doctors. Finally, one of those doctors was experienced enough to recognize and suspect Myasthenia Gravis. Hopefully, that doctor got you on the right treatments and medications and you’ve seen a drastic improvement in your life. While you’re not back to normal, hopefully you’re at least enjoying life a little more than you had.
Increasing awareness of MG may help do that for someone else. Many people have no idea what Myasthenia Gravis is or how it can affect people….unless someone tells them. Many people are experiencing symptoms or see these symptoms in someone else, but ignore them….unless someone tells them. By increasing awareness, you could be helping people recognize symptoms and encouraging them to seek proper treatment. That’s what advocacy is all about. That’s why it’s so important to increase awareness.
The second reason is funding. Without money, research isn’t conducted and treatments aren’t trialed. By increasing awareness of MG, you’re helping spread the word about this disease which may open up additional opportunities for funding and grants. Tons of money is given to research to some of the most commonly recognized diseases, but while MG stays obscure, no one realizes funding is needed.
Think about what Michael J. Fox has done for Parkinson’s Disease or what Montel Williams did for Multiple Sclerosis. They got the word out and funds began rolling in. Although we’re not movie stars and carry a big following, our stories matter and sharing your story, along with spreading the word about MG, helps.
Keep up the great work if you’ve already implemented MG awareness in your community. If you haven’t yet started, there’s still a lot of June left. Get involved.
There aren’t many blessings that come from having Myasthenia Gravis, but the opportunity to help others is one of them. Let’s use our voices, our minds, and our hearts to get others the help they need.