“The rare disease meaning ‘grave muscle weakness’ can cause double vision and difficulty swallowing, breathing and walking. ”
I wanted to share with you my thoughts that came as a result of the story to the press from MGFA members. For many of us with MG it felt like a fake news story.
Most people I’ve spoken to with MG are not holding jobs, exercising,and being active. Most of us are trying to figure out how to prioritize our day to the amount of energy we have, if we can get out of bed. Most of us have not encountered neurologists or any doctor who understands MG without much suffering and seeking. Most of us are living day to day trying to deal with the abilities we’ve lost and the treatments that don’t work or the side effects that sideline you even more. Most of us are trying to avoid going into crisis on a daily basis. For a disease that is “more common and understood than most rare diseases” why did we lose 4 members of the MG community in one month?
The kind of comments published in the article are misleading and damaging to those of us who are struggling on a daily basis.
I would encourage readers to check out the Myasthenia Facebook support pages to see what we really go through. To know our struggles, feel our heartaches is to read our stories. The truth is on those pages, not in a news article that fails to mention that people do die from this disease and how help has been delayed because doctors don’t understand the symptoms and argue with the patient, caregiver, or advocate as to what is wrong.
We’ve a long way to go.