To the editor:
Little-known mitochondrial disease needs to become as well known as cancer by every doctor and every family.
In April 2011, I was a normal, active 52-year-old woman. After getting a cold, then a touch of colitis, my life changed dramatically. I started to notice I wasn’t able to move my eyes from right to left without moving my entire head. I was starting to walk with difficulty, off-balance. I was not hearing as well and was very sensitive to sounds. I was always fatigued, feeling too weak to go on, and had shooting pains and numbness in my lower legs.
My family doctor sent me for blood tests. I also got referrals that took many months to get appointments with specialists, including a gastroenterologist, neurologist, ophthalmologist and ear-nose-and-throat doctor and for what seemed like a hundred more tests—blood, MRIs CAT scans, hearing and vision tests. My condition was declining every day.
By spring of 2014 I had also gotten cataracts in both my eyes—thank goodness for the cataract operation.
For most of that three-year period, the tests would always come back negative, with no diagnosis, leaving me very frustrated.
Finally, in June 2014, after three visits to neurological specialists in Vancouver, there was an answer. I was diagnosed with mitochondrial disease, a rare genetic disease with no cure.
Since then I have found out there are thousands of people living with what they call ‘mito’. Infants seem to be the majority, but anyone can get it, no matter what age.
No one I talk to has ever heard of it, even though one out of every 6,000 people has it, and more children and adults die from it than from cancer. As many as one of every 1,000 babies is born with potential mitochondrial disease, and many don’t survive to their teens. I believe that even most doctors don’t know much about it. That’s part of the reason it takes so long to get the diagnosis.
Mito has been called “the monster disease.” It has hundreds of symptoms, and no two people have exactly the same mix of symptoms.
Very good places to check out are: www.umdf.org and www.mitocanada.org. Funding is needed to keep the research going so that one day they might find a cure for mitochondrial disease.
Nancy Makinen,
Penticton
