Raising Awareness of mitochondrial disease
City resident calls for more education about mitochondrial disease
As an active person, it was difficult for Marsha Crossman when after just a couple of minutes of exercise, her muscles would cramp and fatigue took over.
She wasn’t able to keep up with her peers, and answers as to why were elusive.
“It’s hard when your body doesn’t match what your mind wants to do,” said Crossman.
It took more than two years, five doctors and travelling out of province for Crossman to finally get the answers she needed.
In June 2015, Crossman was diagnosed with Mcardle’s disease — a condition that causes severe muscle pain and cramping — and mitochondrial disease, which occurs when mitochondria can’t produce enough energy for the body to function properly.
“Since getting a diagnosis, it gives you peace of mind to have an answer as to why I was always feeling tired,” she said.
Mitochondrial disease affects everyone differently, but for Crossman it means that whether she’s biking or walking, after just two to three minutes of exercise, her muscles can no longer receive energy and she needs to take a break or slow down. Daily tasks like carrying groceries or opening jars of food can also be difficult. For others, symptoms can include loss of balance, dementia, muscle weakness, digestive problems, heart disease, vision problems, trouble hearing, strokes and seizures.
In 2016, Crossman got involved with Mitocanada, a non-profit that provides “individuals, their families and caregivers with the knowledge and support they need to improve quality of life while raising public awareness” and advancing research in Canada.
“The length of time to get a diagnosis because of a lack of people having knowledge in (Saskatchewan) is the biggest gap for me,” said Crossman, who had to travel to Calgary for a muscle biopsy before she could get diagnosed. “I’m lucky in that I do have the ability to travel, but some people cannot.”
She’s hoping that increased awareness can help change that as well as create a support network for people who have the disease, so they don’t feel alone.
Mitochondrial disease is most severe in children, but there has been an increase in adult-onset disease.
According to Mitocanada, there may be as many as 5.5 million Canadian adults suffering from diseases in which mitochondrial dysfunction is involved — such as diabetes, diseases of the heart, kidney and liver, Alzheimer’s, ALS, Parkinson’s, autism, cancer, blindness, deafness, chronic fatigue, infertility and more.
While there is no cure, in some cases adults may be able to control the symptoms and slow down the progression by incorporating a regimen of diet, exercise and nutritional supplements.
Crossman said she’d also like to one day see the discovery of a new diagnosis method, considering the pain and invasive nature associated with a muscle biopsy.
“I’m telling this story so that other people affected by this or any other disease can still be motivated, and if they can see me out there trying and doing my best.”
All this month, donations to Mitocanada are being accepted at Fresh Air Experience and Good Earth Coffee in Harbour Landing.
The City of Regina has also officially proclaimed Sept. 17 to 23 Mitochondrial Awareness Week.
For more information, to get involved or to donate, visit mitocanada.org.