June is Myasthenia Gravis Awareness Month, and to help raise awareness of this rare disease, I created the “One Hand Tied Behind My Back” challenge.
WHAT IS MYASTHENIA GRAVIS?
Myasthenia Gravis (also referred to as MG) is a rare, incurable, life-threatening neuromuscular autoimmune disease that strikes 2 in 1 million children and teens and is five times more rare in children and teens than in adults.
Myasthenia Gravis is a breakdown in communication between nerves and muscles involved in breathing and the limbs, and any muscles the body uses for movement such as walking or standing or holding something no matter how small or light.
It can even affect a person’s ability to speak clearly or at a level most people can easily hear, and cause chewing as well as swallowing problems leading to choking.
The hardest part is that the more muscles are used, the weaker a person with MG can become, and even resting up won’t necessarily bring their strength back to what most people consider to be normal levels.
WHAT IS MY CONNECTION TO MG?
Most people diagnosed with MG have no family history of Myasthenia Gravis, but in my family, my late brother was diagnosed with Myasthenia Gravis as a teen, and my son was diagnosed with Myasthenia Gravis as a child (a double whammy in light of the fact he is also autistic).
Treatment can help but there is no cure … yet.
DETAILS ABOUT THE CHALLENGE
Throughout the month of June, I am challenging you to be part of the “One Hand Tied Behind My Back Challenge” to help spread awareness of what it can feel like to suffer from Myasthenia Gravis.
Choose an everyday activity such as pouring yourself a cup of coffee and drinking it but instead of doing this with your dominant hand, do it with your other hand. Or try unlocking a locked door using a key but with the hand that isn’t your dominant hand.
It won’t be as easy to do as you think, and you might actually get a little tired in the process. Now imagine how life could be like for someone living with Myasthenia Gravis.
CHALLENGE OTHERS TO GET INVOLVED
Video yourself and share it with your friends, family, and fellow politicians, and challenge them to do the same. Ask them to share their videos with their friends, family, and community to bring as much awareness to this rare disease as possible.
If you decide to be part of this challenge, please include the following hashtags with your video(s):
That’s all you have to do.
IS MONEY INVOLVED?
This is a grass-roots project and so the success of this awareness campaign is banking on as many people as possible getting involved with creating awareness of Myasthenia Gravis. We need compassionate, caring people like you to be part of this campaign for it to be successful.
No, you do not have to donate money to participate.
No, you don’t have to pay an entry fee to participate.
Yes, being part of this awareness challenge will make a difference in the lives of those living with Myasthenia Gravis as well as those who love them.