Since starting my blog, I’ve heard numerous stories of people who suffer from Myasthenia Gravis. There’s the step cousin of my son-in-law, a young lady who was diagnosed with MG 4 years ago and continues to get worse. She’s now in a wheelchair and will be starting infusions along with immunosuppressants. There’s the young checker at a local grocery store who happened to see my “For A World Without Myasthenia Gravis” bracelet and shared how her grandfather also suffers from MG.
While I’m not surprised that I run into people who are friends and relatives of someone with MG, I realized something very important. The only people who know about Myasthenia Gravis are those who know someone who has it.
I kind of liken this to all those commercials we see on tv lauding the next best drug for whatever ailment you happen to have. Some are for people with Type 2 Diabetes, some are for people with Rheumatoid Arthritis, some are for people with cancer. If you’re like me, as soon as I realize those drugs don’t apply to me, I tune them out. I don’t change the channel; I just no longer pay attention. Time to check my emails!
It’s estimated that 70,000 to 100,000 people in the United States suffer from Myasthenia Gravis. Here’s the kicker…. those are the people who have already been diagnosed with MG. There’s probably two or three times that many people who have MG but have not yet been diagnosed. A majority of those probably don’t even realize they may have Myasthenia Gravis because they don’t know what to look for and have never seen a doctor for their symptoms. Some may not even know what MG is. Remember, MG is the Snowflake Disease, so many people will never see a doctor since their symptoms appear to melt away. Oftentimes, MG symptoms like droopy eyelids, hoarseness or weakness in the arms and legs are thought to be signs of “just getting old”.
Why, again, do we need to get the word out about Myasthenia Gravis? The reasons are unlimited, but let’s focus on the two main ones. First, there are people out there who have MG and should be under treatment, but aren’t aware they have it. The quicker you catch MG, the better the chance of controlling it. The second is, because it’s considered a “rare disease”, there is less money donated and allocated to MG than many of the other diseases. I’m certainly not trying to take any money away from the other diseases; I’m just trying to get people to understand that MG needs funding, too. That funding goes towards research, treatments and assistance to those who have it.
As I’ve said many times in my blogs, I’m one of the lucky ones. I can still walk and do many of the things I enjoy doing. Yes, I’m limited, but for the most part I do fairly well. I’m not yet in a wheelchair like my son-in-law’s step cousin. I’m not on a ventilator like someone having a myasthenic crisis. I understand it’s a progressive disease and those days may be coming, but they’re not here yet, so I just enjoy each day and am thankful.
The one area I really wish there was additional research, however, is for those of us with MG that are seronegative. All the new medicines and studies seem to be for those who are seropositive. If a breakthrough can be made on seronegative MG, perhaps I can avoid that wheelchair altogether. Research requires money. That’s why I encourage everyone to donate on my fundraising page. 100% of your donations go to the Myasthenia Gravis Foundation of America to help fund research and assistance.
In addition to your prayers and donations, what I could really use are your ideas. How can we help get the word out about MG? How can we get people to understand what Myasthenia Gravis is and encourage those with symptoms to seek medical attention? I’m trying to make a difference with my blog and donation page, but there has to be more I/We can do. I’d love to hear your ideas and would love it even more if you could help share the word about MG on your social media accounts. Encourage people to get tested if they’re having symptoms. Point people to my blog.
Let me hear your ideas by posting them in the Comments section following this blog.
Helen Keller once said, ” Alone we can do so little, together we can do so much.”
We’re #MGStrong and together we can dream “For A World Without Myasthenia Gravis”.