Our mission at Ben’s Friends is to ensure that patients living with rare diseases or chronic illnesses, as well as their caregivers, family, and friends, have a safe and supportive place to connect with others like them. Living with Myasthenia Gravis is an online patient support community that is powered by BensFriends.org, a network of patient support communities for rare diseases.
Myasthenia gravis (pronounced my-us-THEE-nee-uh GRAY-vis) comes from the Greek and Latin words meaning “grave muscular weakness.” The most common form of Myasthenia Gravis is a chronic autoimmune neuromuscular disorder that is characterized by fluctuating weakness of the voluntary muscle groups.
Myasthenia gravis causes weakness in the skeletal muscles (the muscles that connect to your bones and contract to allow body movement in the arms and legs, and allow for breathing).
The hallmark of myasthenia gravis is muscle weakness that worsens after periods of activity and improves after periods of rest. Certain muscles are often (but not always) involved in the disorder such as those that control eye and eyelid movement, facial expressions, chewing, talking and swallowing.
There’s no cure for myasthenia gravis, but treatment can help relieve signs and symptoms, such as weakness of arm or leg muscles, double vision, drooping eyelids, and difficulties with speech, chewing, swallowing and breathing.
Visit Living with Myasthenia Gravis Patient Community.
This site is a virtual community intended to be a safe place for patients and family members as young as age 12, to visit for information, discussion, venting and mutual support. Members come from many backgrounds. Some have a strong religious faith, and others no faith; some are children and others adults, rich and poor, graduate educated or taught by life. Our common denominators are that we share a life journey, and we try to help each other.
We don’t want you to identify yourself or tell exactly where you live: it is important to us that you should be anonymous here. That encourages openness. (And that’s a major way that we’re different from social media and other disease support sites.) Nevertheless, visitors should also be aware that our discussion forums and groups are publicly accessible and frequently searched by Google. That’s why your speech here should be considered “public”. If you’re tempted to write something about another person that you wouldn’t say to their face, then we counsel you to think first. Speech can be consequential.
Living With Myasthenia Gravis is supported by unpaid volunteer moderators who validate and register new members and monitor ongoing discussions, photo postings and blogs. Very often, moderators are themselves patients or family members of patients. Most of the time, moderators tend to keep a low profile, except in their roles as members of the community, especially if they are well-informed about the state of medicine and research.