When you’re living with a neuromuscular autoimmune disease like myasthenia gravis (MG), you know just how much of an impact the condition can have on your life. However, people who haven’t heard of it may not know or understand just how serious it can be.

After all, myasthenia gravis is a rare disease. Even if someone knows you or another person diagnosed with myasthenia gravis, they may not know just how that diagnosis affects your daily life. Most people who aren’t directly affected by myasthenia gravis will never hear of it.

If you want the world to know more about myasthenia gravis, then June is a great time to tell them. That’s because June is Myasthenia Gravis Awareness Month. It’s the perfect time to get the word out about what myasthenia gravis is, what it means for people to live with that diagnosis, whether it leads to other diseases, and how it affects life expectancy.

It’s also a chance to share what you’re doing every day to stay healthy, keep your sense of well-being high, and raise your quality of life. Plus, June is the month when celebrities with the condition speak out and spread the word.

Raising awareness about myasthenia gravis doesn’t just help you. It also helps people around the world who deal with the diagnosis. The more the public knows about a condition, the easier it is for others to get accommodations at work, at school, and even from friends and family members. It can also mean more support for the people who love those diagnosed with myasthenia gravis and for all the caregivers out there.

More awareness can also mean:

• Better, faster diagnosis, because doctors and neurologists know what to look for
• More research, because you attract the attention of people who perform and fund studies
• Higher-quality treatment options, because there’s more research
• Less isolation for people living with myasthenia gravis

If you’d like to participate in raising awareness this June, here are some things you can do.

1. Spread Myasthenia Gravis Symbols

There are a few symbols you can wear, share online, tattoo on your body, or otherwise display to start conversations about myasthenia gravis. These include the color teal (which can be worn as a teal ribbon), a sloth, and a snowflake.

If you steadily put these symbols out there, people will eventually start conversations with you. They may want to know what the symbols mean, what that particular color ribbon means, why you’re so into sloths, and more. These conversations will allow you to share information about myasthenia gravis.

2. Advocate for Yourself

If you're dealing with health care providers, bosses, coworkers, teachers, and more who don’t know about myasthenia gravis, advocating for yourself is a great way to share more about the condition. If you’re dealing with a new medical team, for instance, you might bring a brochure explaining the condition so they are better prepared to help. If you need accommodations at school or at work, you can come armed with research and knowledge about the condition to help them learn.

Advocating for yourself is a constant when you’ve been diagnosed with myasthenia gravis. At MGteam, members talk about how often they have to do it. “Advocating for yourself is a must with an MG diagnosis,” one member shared. “Sometimes, you may have to educate the M.D. you’re talking to as well, to make them aware of the disease.”

Some people choose to focus on advocacy. They are willing to become advocates for others after advocating for themselves for so long. One member said, “I’m hoping to become more involved in our MG community as an advocate.”

3. Share About Myasthenia Gravis Online

Because living with myasthenia gravis often means slowing down, only doing safe exercises, and reducing stress, getting out there to advocate for yourself or even to attend an event might feel like a lot. However, sharing about the condition on social media is another way you can help.

Experts recommend:

• Tailoring your post for the particular platform you’re sharing on
• Finding and using myasthenia gravis hashtags (like #myasthenia or #mgstrong)
• Sharing content that is authentic and reflects your own experience with myasthenia gravis

Some members of MGteam provide resources for social media. One member created several memes related to the condition, then shared them and said, “#MyastheniaGravisAwareness Please feel free to use and share, help spread awareness!” The Myasthenia Gravis Foundation of America (MGFA) also offers images and a fact sheet made to share online as part of its awareness tool kit.

4. Organize or Attend Myasthenia Gravis Awareness Events

If you have the energy and feel like going out won’t tax you too much, consider organizing an event around myasthenia gravis. You can invite people who live with the condition and the general public. It can even be an online event if going somewhere in person is too much.

Keep in mind that events like these don’t have to be formal. One MGteam member explained, “I didn’t meet anyone with the condition until 2013 when a young lady in my area organized an awareness picnic with me and another MG snowflake.” Even simple events can help people living with myasthenia gravis connect to one another and promote greater community awareness.

5. Write an Op-Ed for a Local Newspaper

If you’re a writer, consider producing an op-ed for your local paper. These are pieces in a newspaper that aren’t written by reporters. Most of them are produced by people who have relevant and important knowledge the community should know about.

If you want to do this, start by choosing the news media where you would like to share your story. Search online to find guidelines or instructions for how long your piece should be and where or how to submit it. Then write your piece and send it in. June is a great time to create these because the MG Awareness Month angle makes your piece timely.

6. Raise Money

If you’re up for it, fundraising is a great way to also raise awareness. The Myasthenia Gravis Foundation of America invites you and your friends to join its Dare to Care event in June. This challenges you and your fundraising team to get 30 donations of $30 (or more) in the month’s 30 days. As you ask people to donate, you will get to explain myasthenia gravis to them, so you’ll raise awareness that way, too.

7. Light Up a Building

If you live close to a notable building or architectural structure, consider asking those in charge of it to light it up with teal during the month of June. You can then notify the media and possibly even do an interview talking about myasthenia gravis. Consider asking a local photographer to donate their time to get some quality images of the structure all lit up. Then, you can share these online and submit them for publication in local newspapers.

Talk With Others Who Understand

MGteam is the social network for people with myasthenia gravis and their loved ones. On MGteam, more than 1,000 members come together to ask questions, give advice, and share their stories with others who understand life with myasthenia gravis.

Do you plan to participate in myasthenia gravis awareness month in June? Share your experience in the comments below, or start a conversation by posting on your Activities page.