June is MG Awareness Month

June will be here before we know it and June is Myasthenia Gravis Awareness Month. That makes it a great time for all of us to get involved in getting the word out about MG.

You’ve probably already discovered that when you tell someone you have Myasthenia Gravis, they have no idea what it is. In fact, the first time a doctor mentioned it to me, I had no clue what they were talking about. That’s because MG is still considered a rare disease.

What makes it rare?

1. Low Incidence and Prevalence – MG affects only a small percentage of the population (14-40 cases per 100,000 people worldwide) compared to more common neurological disorders.
2. Underdiagnosis or Misdiagnosis – Because MG symptoms (muscle weakness, fatigue, drooping eyelids) can mimic other conditions, it is often overlooked or misdiagnosed.
3. Lack of Public Awareness – Unlike more prevalent diseases, MG doesn’t receive widespread public recognition, leading to fewer diagnoses and research efforts.
4. Genetic and Autoimmune Nature – MG is an autoimmune disorder that arises due to the body’s immune system attacking acetylcholine receptors. Such conditions are generally less common than infectious or lifestyle-related diseases.
5. No Known Cure – While treatments exist to manage symptoms, the lack of a definitive cure contributes to its classification as a rare and complex disease.

Since the disease is considered rare, it doesn’t receive a lot of attention or recognition. That’s where we come in. We can become our own ambassadors for MG by getting the word out and letting people know about it. June is a perfect month to do that. By getting involved, you’ll be joining thousands of people around the country in helping increase awareness of this strange, quirky and onerous disease.

Last June, my family and friends got involved in helping spread awareness. You can see many of the photos on my website page. Some wore bracelets, some wore t-shirts, some placed signs in their yards, and some even bathed their houses in teal lights (teal is the official color of MG). It was almost overwhelming for me how much support I received from family and friends during last year’s campaign. I also hosted a fundraiser page which helped contribute to research through the Myasthenia Gravis Foundation of America (MGFA).

If you’d like to get involved, it’s not too early to start planning for MG Awareness Month this June. Many of the ideas I used, I got from the MGFA website at: https://myasthenia.org. Other ideas came from family and friends. One of the biggest hits was the bracelets which my daughter found on Amazon. If you’re interested, you can find them here: https://amzn.to/4gVwLZT

The MGFA website has other ways for you to get involved, as well. Be creative, but help get the word out about MG.

I’m a pretty quiet and conservative person. I’m not the kind that likes to draw attention to myself, so writing this blog and getting involved in MG Awareness Month was something “out of the box” for me. The only reason I decided to do it was because I realized that was one way for me to help others who may be experiencing something similar. It was a small step, but it turned out to be life-changing. Instead of hiding my MG, I’m becoming an ambassador for MG and helping others in the process.

The nice part about getting involved is you don’t need to invest a lot of time, money or effort. Anything you can do to get the word out about MG will help. There are so many people out there who have MG who don’t even know they have it. They could be getting treatment, but instead they ignore their symptoms, or doctors are ignoring their symptoms for them. In defense of doctors, since MG is rare, few have any experience with it, but if someone is having symptoms, then perhaps it’s time to get referred to a specialist, someone who knows what to look for in an MG patient.

I’ll be getting with my family and friends soon to decide what we’re going to do during MG Awareness Month this June. Think about perhaps doing something in your family or circle of friends. It’s not only a good thing to do, it’s a fun thing to do. I think you’ll be amazed at how many family members and friends step up to the plate to help. It’s their way of showing you how much they love and care about you. The best part is you’ll also be doing something to help others.