Speaking Out for Myasthenia Gravis

What does awareness mean to me? Awareness is knowledge. If you have experienced something, then you at least have a basic knowledge of its existence in the world. Even basic life experiences like eating, breathing, and sleeping.

The amount of awareness an individual has on a subject matter is up to them. Whether about myasthenia gravis (MG) or how to make a paper airplane - it is up to each person to seek out a further understanding if they so choose.

That is usually based on a personal need because of their own life situations. Most people have a limited field of knowledge to help in their everyday life.

Awareness overload

In our modern world, we become aware of things all the time. It is an awareness overload! There are hundreds of different awareness days. Zombie, hotdog, pizza, clean air. You name it - it has a special awareness day or month.

Every and all advertisements are for our awareness. Products to buy, medical conditions, places to go, things to do, where to turn while driving ... the list just keeps going.

People are always listening to this constant awareness. But with just awareness, there is no growth. There is no increase in knowledge or understanding. Especially of rare medical conditions such as myasthenia gravis.

Setting MG apart

My goal is to help educational growth. To be a leader, and not a follower, of this popular trend. I not only want to help educate the public but to challenge the leaders in myasthenia gravis awareness. I also want to challenge those with MG to speak out.

In order to set MG apart from the hundreds of awareness days, we need to find our unique personalized branding. For example, super-heavyweight warriors, not just MG warriors. Or MG roller-coaster masters. We need something that sets us apart!

Educating the medical community

I am working towards educating the medical community as well as the public. Not just awareness - I am helping them understand what we actually live with versus the perceptions of MG. I personally am getting in touch with our local hospitals to talk with the CEOs about myasthenia gravis.

There are 4 people, including myself, with myasthenia gravis in my area. I am helping to ensure the hospital, emergency room, and EMT staff are educated if we would need their services at any given time. That's 4 people, 3 small hospitals, 30 miles apart.

What can you do?

This is something each person can do for themselves, or friends and family members could join. If you live in the same area, you can get together to talk with the CEO of your hospital as a group.

You could gather in person or through something like a Zoom meeting to share your concerns. You can spread awareness for your personal healthcare with MG - we may all be different in our symptoms before an emergency arises.

For myasthenia gravis awareness month, I am trying to post daily on social media about MG facts. I am also preparing to write a letter to the editor for the 3 local daily newspapers about myasthenia gravis.