It's Rare Disease Day, but advocacy doesn't happen just once a year. There are tons of ways to involve yourself in advocacy every day of the year.
Learn as much as you can about myasthenia gravis
There are over 7,000 known rare diseases, so even superhero doctors, nurses, healthcare workers, and EMTs can’t be experts in every single one. The more that you know about myasthenia gravis, the better you’re going to be able to manage your own health, monitor your symptoms, and translate your needs to your care providers. Educate those you meet – kindly and respectfully – as you go.
Be proactive about your health
MG symptoms fluctuate. Pay attention to when you feel best and when you feel worse. Track your symptoms and pay attention to things that may trigger or exacerbate them, as well as things that help keep them at bay. I recently started using the MyMG Mobile App – it helps me notice things I normally don’t pay attention to. This helps me better schedule my day around my fluctuating symptoms and avoid things that make my symptoms worse.
Share your story, findings, and feedback
Share your story with anyone who will listen. Talk about MG with your friends, coworkers, and share your story on social media. Share your feedback with the MGFA to make it known what resources you need, what programs you would like to see, and what legislative obstacles stand in the way of your healthcare. Share your data in the MGFA Global MG Patient Registry so that your experience can lead to new, groundbreaking research, technologies, and treatments.
Build a community
Find a way to connect with people who understand you. The MG Friends program pairs people with MG and their caregivers to talk about MG management over the phone. MGFA Support Groups take place all over the country, in person and over Zoom. The MGFA Online Community hosts chats and events where MG patients can share their experiences. MGFA Community Health Fairs connect people with each other and with different kinds of support resources in their area. The annual MGFA National Patient Conference in March is an opportunity to convene with patients and caregivers like you from all over the USA!
Do what you can
If policy interests you, get involved with legislative advocacy. You can sign up for action alerts and follow bills that impact healthcare, write emails to your legislator, or even get involved in drafting future legislative policy to change the landscape of public health and healthcare.
If policy isn’t your jam, you can still be an advocate in everyday life. Advocacy can simply be explaining MG, telling someone why you use a cane or wear an eyepatch, saying no to taking on a commitment, or requesting information from your doctor about a new treatment. Your “ask” could be for a relative to check out the MGFA website to learn more about your disease, or for a boss to help find solutions for mitigating activities that cause you fatigue. Increasing awareness of MG, telling your story, and articulating your needs is advocacy in a nutshell.
Laura serves as MGFA’s Operations Manager. After being diagnosed with myasthenia gravis in 2019, Laura has embarked on a personal and professional mission to better the lives of MG and rare disease patients through advocacy, policy, and research.