Doctors were baffled when happy and active 17-year-old Chelsey-Ann arrived at the hospital having trouble reading and communicating. The situation got even more dire when she fell into a coma the next day.
“The doctors tested me for everything but couldn’t find what was wrong with me,” recalls Chelsey, now 24 and married. She credits her aunt, a family doctor, with suggesting CNS vasculitis, a diagnosis confirmed by a brain biopsy. “After one month in a coma, I finally woke up and started my road to recovery.”
“Life after diagnosis was difficult because I had to adjust to a new sense of ‘normal’,”Chelsey says. “After relearning to walk, I had to learn how to live with a new lifestyle. I had to be more patient with myself because what used to be ‘easy’ for me was more difficult, such as climbing several flights of stairs or walking a mile. I was blessed that my neurological recovery was speedy and within two months after I woke up from my coma, my brain was ready to work at the same pace as my peers in school — much to the surprise of my doctors and teachers. The doctors called me The Miracle Child because I really did defy their prognosis.”
Today, the biggest challenge for Chelsey is knowing that the disease could flare if not properly managed. “I was blessed to have had five years of remission after my diagnosis in 2005, but then my illness returned twice in 2011 with different symptoms, and each time has made me feel more disheartened about living with this disease,” she admits. But not for long.
“When I get angry or discouraged about this, I remind myself that l still have so much more to offer in life, and I shouldn’t hide in a corner because there is always a risk of me getting sick again. Each flare up has taught me more about hope, courage and perseverance that many people do not get to learn in their normal lives. Experience – both good and bad – is always useful, and I have used my experience with CNS vasculitis to show others the power of overcoming. Living with vasculitis doesn’t mean we have to stop living, it means that we live with more challenges than ‘ordinary’ people, but that is what makes us ‘extraordinary’, right?”
Chelsey started a Facebook group called HOPE – Helping Other Patients Everywhere as a source of encouragement and hope for people living with a chronic disease. Community members complimented her writing, which motivated her to begin a blog (http://helpingotherpatientseverywhere.blogspot.com/).
”It has been wonderful to have had parents and other patients message me because they found my blog while searching about CNS vasculitis online, and they were happy to find a ‘real’ person with this illness,” she explains. “I hope that other people can be encouraged and put their own stories into perspective when they read about my story of hope and struggle. I remember what it was like to be in a dark place and angry at life because of my illness. I want to be the type of person who shines light in the world.”
To read another article about Chelsey from Neurology Now on the Academy of Neurology web site, click here.
Published: January 2013
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