Every year, people from across the world come together to celebrate Myasthenia Gravis Awareness Month during the month of June. The Myasthenia Gravis Foundation of America (MGFA) plays a big role this month, as they provide resources, opportunities, education, and more – all in the effort to raise awareness for this rare disease!
First things first, what is this rare disease? Myasthenia gravis (MG) is the most common autoimmune neuromuscular disorder. Those affected experience weakness in the voluntarily controlled muscles. Throughout the world, about 20 of every 100,000 people have MG. It is an autoimmune condition, meaning the body attacks itself, specifically the proteins necessary for communication between the brain and muscles. This causes symptoms like drooping eyelids, issues with chewing and swallowing, fatigue and weakness in the skeletal muscles, slurred speech, double vision, and a changed gait. Physical activity worsens the symptoms, whereas periods of rest can improve them. For a small percentage of those with MG, weakness in the chest could lead to life-threatening respiratory issues.
Doctors diagnose this condition through a physical exam, evaluation of patient history, blood tests, and EMGs. Like many rare disorders, a diagnosis is not always easy to obtain. The similarity of symptoms to other conditions often results in a misdiagnosis. After doctors have confirmed that one has MG, treatment consists of steroids, plasmapheresis, or surgery to remove the thymus gland. While there is no cure, some medications can significantly improve symptoms or even induce remission.
Raising Awareness with the MGFA
This year, the MGFA has named the theme MG Action Month – Turning Awareness Into Action. There are plenty of ways for you to get involved, and the best way to get started is with the Awareness Toolkit! After you’ve gone through that helpful information, here are some other things you can do!
- You can get involved locally by looking at the #MGStrong Map to see where others are looking to do the same! Post about your activities, see others, and share photos!
- Get involved with legislation surrounding MG! It’s easy, especially with the MGFA’s sample proclamation document. Using this template, it’s easy to reach out to your legislative officials to ask them to make an official declaration that marks June as MG Awareness Month.
- You can also raise awareness through the media. Reach out to local reporters or other media professionals who can spread the word about MG and this special month. Use this media pitch sample to get started.
- If you want to get your own word out into the media, try writing an op-ed piece for your local newspaper. The MGFA provides a sample to help you out, and all you have to do is reach out to the senior editor and submit what you’ve written.
- Something easy to do is to place an MG Awareness Month lawn sign in your front yard! Find it here!
- Looking back at your toolkit, you can see page 23 details lighting up buildings and structures in your community to raise awareness. If you know a good place, contact its building management using this sample letter.
- You can take action on social media too! Here are some sample posts for the following categories:
- If you like to cook, you can also participate in a fun challenge by sending your favorite recipes to [email protected] to be included in the online cookbook. Make sure to use the subject line MGFA Cookbook Challenge!