June is Myasthenia Gravis (MG) Awareness Month. For rare disease patients, awareness months are particularly relevant because most people have not heard of our conditions, and there is limited funding for research and treatment for “orphan diseases.” The medical community and the general public often have limited to no interaction with rare diseases, so this month is the time to say “I have heard of myasthenia gravis” and help others be able to say it as well.
MG is a neuromuscular autoimmune disease that causes weakness and fatigue in voluntary muscles, and the severity of the condition can vary widely among patients. This is why the snowflake is a symbol MG patients use as representation. Patients can have difficulty speaking, walking, chewing, swallowing, etc., and the categories of the condition are ocular MG (affecting the eyes) or generalized (affecting the whole body).
June is a good time for patients to use social media to raise awareness about the condition and talk about their experiences. It can help family, friends, and strangers know more about the disease and help patients connect with other patients.
Community engagement is a powerful tool for awareness. The Myasthenia Gravis Foundation of America has resources to help patients and others raise awareness during the month. All forms of advocacy are valuable, even small forms like sharing an MG-related meme or engaging in the #IHaveHeardofMG hashtag campaign to raise awareness online. Small actions are often the impetus for significant change.
Read about experimental therapies for MG
One of the biggest hurdles for rare disease patients is the lack of treatments, diagnostic tools, and research to find a cure, and June is a great time to donate and contribute to MG research. Just recently the market for MG treatments has expanded, and increased awareness and funding were the fuel for that progress.
Multiple new treatments were recently approved by the US Food and Drug Administration (FDA) and more treatment options are on the horizon. There are other treatments that have been used for many years as “off-label” treatments as well, but having newly FDA-approved treatments is an exciting development for MG patients and the medical community. June is a time to celebrate this and continue to work toward more treatment and diagnostic options.
For patients, in particular, MG awareness month can help them feel less alone and isolated in their experience. It’s a reminder that they aren’t alone in the challenges of living with and managing MG, and there are communities that exist they can engage in, even virtually. Many of us likely won’t ever meet another MG patient in person, but we can connect and build relationships online.
Since we have to spend so much time and energy advocating for ourselves, June is a time to learn more about our condition, how it can fluctuate, and how to communicate with medical professionals about our disease by connecting with other patients and MG experts. Interacting with other MG patients and sharing knowledge means we don’t have to do this all on our own.
This month is a reminder of how invaluable community is for MG patients and rare disease patients generally. It’s a time for patients, caregivers, medical professionals, etc to seek out knowledge and use that knowledge to improve outcomes for MG patients. This June, let’s help others around us be able to say “I have heard of myasthenia gravis” and continue to create positive change for the MG community.