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Op-ed: Spinal condition is rare and challenging

My medical condition is rare and that’s why I believe it’s important to raise awareness about it
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Parksville-Qualicum MLA Michelle Stilwell, left, with Lt.-Gov. Judith Guichon looking on, is sworn in as B.C. minister of social development and social innovation earlier this month. (Photo submitted by office of MLA Michelle Stilwell)

BY MICHELLE STILWELL

Coping with a debilitating illness is not easy, as many know. And one that is under-diagnosed can be even more challenging.

My medical condition is rare and that’s why I believe it’s important to raise awareness about it.

Every year, five in 100,000 people are diagnosed with a cerebrospinal fluid leak. This medical condition results from a small tear or hole in the outer membrane that holds spinal fluid. This means spinal fluid can leak out into the body. As a result, standing or sitting causes the brain to slump because there isn’t enough fluid to cushion it.

When the brain slumps, this causes severe pain, blurred vision, eye pain, neck and back pain, hearing impairment, spasms, nausea and many other symptoms. The only way to relieve the symptoms is to lie down.

A CSF leak can happen at any age through trauma or other injury, and are not confined to people with a spinal cord injury. Did you know actor George Clooney is a leaker sustaining his injury while filming a movie? The average age for a CSF leak is 42, and it’s believed women are twice as likely as men to develop the condition.

The injury that resulted in my leak occurred in February. My condition progressively worsened through March and April until it became near impossible to function throughout the day. Since then I have had three procedures (two unsuccessful) to repair the hole in my membrane.

The last few months have been a long journey trying to cope with this condition while at the same time fulfilling my responsibilities as minister, and running and being re-elected as MLA for Parksville-Qualicum. While I participated in local all-candidates meetings, dozens of public events, made hundreds of phone calls and sent just as many e-mails during the campaign, I wish I could have done more. I am so grateful to the volunteers and supporters who carried on while I was at my weakest.

I want to thank everyone for the well wishes and amazing support during this challenging time. While I haven’t been as visible in community as I would have liked over the last couple months, I am continuing to heal and feel I am finally making progress. I should be back to my old self in no time.

For more information about this medical condition, I would encourage you to visit this link.

Michelle Stilwell is MLA for Parksville-Qualicum and B.C. minister of social development and social innovation.