It is Dystonia Awareness Month, and one woman from Steinbach, Man., is sharing her story with Global News to get the word out.
Vanessa David said she is well-acquainted with pain.
“I had what I thought were tension headaches and severe tension in my neck area for so long that that was almost normal to me,” she said.
“But, just over three years ago now, that started to change. I started to develop really severe headaches that couldn’t be managed by normal migraine medication.”
It started to interrupt her life.
“I can remember teaching a class, and being like mid-class, and this just came on so suddenly. (I didn’t) kind of know how to manage it in that moment,” she said.
She said it tipped her doctor off to something more, and about two years ago she was diagnosed with cervical dystonia, a rare neurological movement disorder affecting the head, neck, and sometimes shoulders.
Dr. Sean Udow, a neurologist with the Rady Faculty of Health Sciences, said it generally has visible symptoms.
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“Cervical dystonia is characterized by having either an abnormal head position — so a head tilt — sometimes a head tremor as well,” he said.
The doctor says it’s the most common kind of dystonia, though still rare, with only 30 people in one million having it. Altogether 50,000 Canadians have some kind of dystonia, which doesn’t have a cure.
The rarity and incurable nature of her diagnosis made the realization bittersweet for David.
“Having an answer at first was relieving. In the months that followed, there was the acceptance piece that had to happen to realize this is something I will now deal with for the rest of my life,” she said.
“It’s hard because there’s not someone at the grocery store who also has it… You don’t have a group of people surrounding you that can say, ‘Yeah, my friend went through that,’ because of how rare it is.”
But there is hope, Dr. Udow said, with more research being done to understand the condition and develop treatments for it.
Right now, treatments are strictly symptomatic to relieve the associated discomfort.
Another triviality with dystonia is that it can be hard, even impossible, to know what caused it.
“Dystonia can be idiopathic, which in the case of cervical dystonia is the most common cause,” Dr. Udow said. That means, “We don’t know why people get cervical dystonia, but there can also be both acquired causes and genetic causes.”
David says she is currently undergoing genetic testing to see if she can learn the source of her condition.
No matter what, though, she’ll keep moving forward with a smile on her face.
“I can do this one step and one day at a time and kind of learn to embrace the best days, right? Like, this is a good day. Do it. Enjoy that day,” she said.
More information about dystonia and resources can be found at the Dystonia Medical Research Foundation online, at dystoniacanada.org.
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