July 10, 2021
From the June 7, 2021 Blog Post, “A Story from One with MG”, our guest author, Rebekah Dorr, shared her story with us. Placed here in the main menu, her story is now easier to access so you can read about her courage and perseverance. This remarkable woman, passionate to find a cure for MG, is the owner and communicator of Facebook community forum group, (with nearly 15,000 members), Myasthenia Gravis Unmasked.
What is Myasthenia Gravis?
By guest author, Rebekah Dorr
Our brain sends a signal to talk to our muscles through a chemical messenger called acetylcholine. This messenger travels down our nerves to a junction called the neuromuscular junction that sits between our nerve fibers and muscles. On specific muscles, sit acetylcholine receptors waiting to “catch” the chemical messenger so that the muscles can contract. Think of the messenger and receptor sites like keys in a key hole. They lock and turn and muscle contraction ignites.
In MG, the acetylcholine receptors are damaged by rogue antibodies who think they are helping our bodies but have ended up with incorrect blueprints. Our immune system deviates from it’s normal job and begins intercepting the chemical messenger and blocking and destroying the receptors. Our bodies end up becoming weak without the needed signals and “ignition” to begin contraction. So all our muscles know how to do is stay relaxed and use the little signal they can.
The more a patient moves, the more demand for the messenger acetylcholine that is sent to continue muscle contraction and the more our immune system sends antibodies to attack, leaving us with muscles that want to contract and cannot, making us tired and weak.
There are many things that can make this process worse too. The wrong meds can also block our messengers and make us weak. Heat, stress, thyroid disease, menstrual cycles, other autoimmune diseases and more all contribute in various ways.
For some patients, MG only affects their eyes. They can get double and/or blurry vision and drooping eyelids. Sometimes their extraocular muscles around the eyes get weak too and can cause eyes that don’t stay aligned etc. Headaches are common with vision issues in MG and the quality of life is impacted.
For other patients, MG progresses to other parts of their body. Some have it in their neck, jaw, tongue, throat, and vocal chords. Others may see it in their arms, legs and hands. Many will have it in all of these places or different combinations of it. It can also move around and affect different combinations of these muscles. The most difficult and life threatening impact is when MG attacks a person’s diaphragm causing respiratory distress and in some cases, crisis.
Patients can struggle to chew and swallow food and medications, play with and care for their children, consistently work at basic hygiene like showering every day, cooking, driving, singing, gardening and so much more. It will impact their relationships, their hobbies, their interaction with the medical world and society, their careers, their mental and emotional health and more. All patients have altered quality of life and some have it more mildly and some severe. It spans a wide range of symptoms, responses to treatment and prognosis.
Over time, the impact can quietly take its toll without you ever seeing it.
Yes, we are brave and we push on. You may see us laughing, posting pictures and even going out once in a while. But don’t doubt our struggle. Medicines can only go so far and they have their own symptoms we must cope with, on top of being believed, treated and supported in the midst of something that changed our whole world.”
What is Myasthenia Gravis?
Copyright© June 1, 2021 Rebekah Dorr
Original post on Facebook, Myasthenia Gravis Unmasked,
Used here with permission.
I am so grateful that Rebekah Dorr, who, has lived with myasthenia gravis since 2011 when she was “…thrust into the new world of rare disease…,” is sharing her words here, with us.
With her wealth of knowledge, “learned as I went, out of sheer necessity,” Rebekah is a dedicated advocate on behalf of so many, fighting the stigma of MG.
Her determined ongoing efforts with her Foundation, her Facebook group and her blog, as well as continued conversations with those who want to know more, are evidence of her focused passion. I cannot say ‘tireless’ because those with myasthenia still get fatigued!
This dynamo of enthusiasm for finding a myasthenia gravis cure has been working as Founder, Director and CEO, running her non-profit Myasthenia Gravis Hope Foundation since early 2017.
She writes, “It is the mission of the MG Hope Foundation to be the voice of our patients, to focus on bridging the gap between patient needs and clinical interaction, create positive clinical partnerships, to bring advocacy and education to the forefront and to engage in the arts to help foster awareness and challenge the stigmas faced by the growing Myasthenic community today.”
She gives untold hours to others through conversation, making videos, and responding through the Facebook group, Myasthenia Gravis Unmasked, where she is Founder, owner and chief communicator with a community listing over 14,000 followers.
Their ‘About’ statement reads, “Here, we focus on clinical education and support while offering free clinical advocacy from a globally experienced advocate. Here, you become family”
As if that were not enough, Rebekah has written her blog, MGHope -Myasthenia Gravis since 2016, sharing, educating and clarifying myasthenia gravis issues while advocating/fighting to bring attention to the need for more studies, more doctor understanding, more clinical listening, all to help discover a cure for the devastating disease, myasthenia gravis.
Thank you, Rebekah…you’ve made my heart sing! ~ Judy Shone
Want to walk for, or donate to Myasthenia Gravis Society of Canada?
Visit Donate to MG Canada
Rebekah Dorr’s Story (c) 2021 Judith Allen Shone
“What is Myasthenia Gravis” (c) 2021 Rebekah Dorr