While most people likely have never heard of myasthenia gravis, for one Cowichan Lake resident who was recently diagnosed with the medical condition, it’s a 10-dollar word for difficulty.
“I lost the use of the muscles in my neck. My chewing was extremely difficult. The swallowing was extremely difficult. I had difficulty breathing,” said John Burtch, who was diagnosed with myasthenia gravis in May.
“It started on the Victoria Day weekend… I noticed that my left eye was closing, it was just drooping closed,” he said. That Tuesday he went to his family doctor in Lake Cowichan, who immediately identified the condition. A trip to an ophthalmologist and then a nuero-ophthamologist confirmed that he had developed myasthenia gravis.
“I sort of went downhill right away.”
Myasthenia gravis, frequently referred to as simply MG in medical literature, is an autoimmune disorder that causes weakness and the irregularly rapid fatigue of certain muscles.
According to Muscular Dystrophy Canada’s website, which chronicles information about a wide range of neuromuscular conditions, the cause of MG is unknown but it affects approximately one person per 5,000 people worldwide.
The immune system of a person with MG basically attacks their body, targeting certain receptors where nerve endings join muscles.
Burtch said the condition is unpredictable; it is variable, not progressive like some disorders.
“One day I could be just fine and the next day I might not be able to use my left side or my face might droop like I’ve had a stroke. Things like that,” he said.
Upon the suggestion of a friend, Burtch started a GoFundMe campaign to help defray some of the expenses he is going to incur when upgrading his home in light of this diagnosis.
He hopes to raise enough money for an adjustable bed because of the amount of time he’ll need to spend resting, a backup generator for the CPAP breathing apparatus he is increasingly reliant on and an iPad to allow him to stay connected despite frequently being confined to his bed.
“Because you have to rest so many times during the day, I can still work on my church stuff from my iPad, I can still keep in touch with people on Facebook and stuff,” he said, referring to his work as pastor of the Youbou Community of Peace church group.
“I can’t sit at the computer because [of] my head, if I sit at the computer, if I go to look down my head falls down.”
Burtch said an iPad would also help him communicate in an emergency, especially if he were to have respiratory problems.
As of press time, his GoFundMe campaign has raised $845.
This week, Burtch was hospitalized at Victoria General Hospital where he underwent a series of immunoglobulin treatments to help counter attack the antibodies affecting his muscles. He said the support and encouraging words he’s received from the community have been fantastic.
“The community’s been just great as far as that goes. People have been contacting me on Facebook and what have you,” he said.
Because MG occurs in all races, genders and potentially at any age, Burtch said he feels everyone should be vigilant about experiencing potential symptoms such as drooping eyelids; weakness in muscles used for chewing, swallowing and talking; difficulty lifting the head; or difficulty breathing.
“It’s a disease that’s missed quite often and people don’t get diagnosed on time, so if anybody thinks that they have something going on, be insistent,” he said.