The first described case of Myasthenia Gravis (MG) is of Native American Chief Opechancanough, who died in 1664, reports the Journal of Clinical Investigation.
Eight years later, English physician Thomas Willis described a patient with the “fatigable weakness” of limbs and bulbar muscles characteristic of MG (3). In the late 1800s, the first modern descriptions of patients with myasthenic symptoms were published (3), and the name myasthenia gravis was coined by fusing the Greek terms for muscle and weakness to yield the noun myasthenia and adding the Latin adjective gravis, meaning severe (4).
Jane Ellsworth founded the Myasthenia Gravis Foundation of America Inc. (MGFA) in 1952 when her teenage daughter Pat was diagnosed. Because little information was available, Jane established the MGFA with the sole mission to have “A World without MG”. Until a cure is found, the MGFA will continue Jane Ellsworth’s efforts to help patients and their families manage the difficulties of living with MG.
The amount of resources providing people with information has grown and the MFGA has a community page on its website. MG informational websites encourage those living with the condition to share their story in support groups in a safe setting as it not only gives a sense of empowerment, but helps others find reassurance and learn new strategies to live with MG. Those groups can also offer educational programming and invite guest speakers from your community to present on topics. You can also share information with your family and friends who may need support as meetings are an opportunity for them or a caregiver to learn more about MG.
The MG Association of B.C. has a membership that invites anyone with interest in MG, has it or cares for a loved one to join. For $20 a year, the membership includes a bi-annual newsletter, free information pamphlets, notification of special programmes of interest, special group meetings, as well as staff willing to answer questions or concerns. People can join by emailing email@example.com or by phone 604-451-5511, ext 1284.
During this COVID-19 pandemic, groups have been doing virtual meetings and are open to anyone. Many groups have educational guest speakers so anyone can learn from their expertise.
Conquer MG (https://www.myastheniagravis.org/we-can-help/chat-room-links/) informs people of chat rooms to connect with others. Myastheniagravis.org says that most MG patients place a high value for support from their family and friends. If that is you, know it is appreciated. Through that website, people can interact on https://www.dailystrength.org/group/myasthenia-gravis and engage on topics that people create, including recent ones surrounding COVID-19 vaccinations and more.
It’s important to try and understand what having MG means. It takes time for someone to accept that they have the condition and they may face a loss of health, limits on their activity and more. The uncertainty causes stress and when symptoms appear, friends could be concerned about what’s next.
Antidote.me has information on a variety of groups that people might want to connect with such as Myasthenia Gravis Sisters, which has more than 5,000 women that feel safe and without judgment to talk about their issues. They simply ask that you be kind to one another, and their only rule is “no drama, mama!”
For more information about research in your local area please contact the Medical Arts Health Research Group at firstname.lastname@example.org or visit our website at https://healthresearch.ca.