Walking to find a cure for vasculitis

Each weekend thousands of people take to the streets of our communities, walking and running to raise money for charities. Every one of them has found a cause to believe in, a bit of hope through helping. And every one of them has a reason for being there.Today, Julie Dahl of Glen Ellyn discusses her life with vasculitis. One way she can control the disease is by walking Saturday in On the Move for a Cure to benefit the Vasculitis Foundation.

I love to sail with my husband and like any sailor, I prefer to hoist the mainsail and take the helm rather than float aimlessly at sea. I have no control over vasculitis, so walking in On the Move for a Cure is one way I can take the helm and raise awareness about the disease.

My introduction to vasculitis began soon after the birth of my son, Noah, four years ago. For months after his birth I was getting night sweats, high fevers, extreme fatigue and pain in my neck at the location of my carotid arteries. Those were difficult times; my husband and I were taking care of our newborn while living in Huntington Beach, far away from the helping hands of my family in the Midwest.

Two months and four separate doctors visits later, I found out I had vasculitis, specifically a form called Wegener's granulomatosis that affects roughly three in 100,000 people. Surprisingly, I am one of the lucky few who was able to get diagnosed "right away," before the disease did any major damage.

What is vasculitis? It is a family of potentially life-threatening diseases of unknown cause linked by blood vessel inflammation and an overactive immune system. Until 30 years ago, vasculitis patients had an average life expectancy of less than a year. One well-known patient of vasculitis was John Travolta and Kelly Prestons's son, Jett, who lived with a form called Kawasaki disease.

Typically, treatment involves taking a combination of corticosteroids and immunosuppressant therapy or chemotherapy, depending on the patient. Early diagnosis is critical to help avoid permanent organ damage because narrowing of the blood vessel wall deprives affected tissues and organs of blood supply, resulting in permanent damage. Sadly, far too many physicians are unfamiliar with vasculitis.

As a patient of vasculitis, I go for monthly blood work-ups and take two or three trips a year to the Cleveland Clinic, one of only a few specialty clinics that really understand vasculitis. I live with scarring on my lung tissue and chronic fatigue, and take medications with unfavorable side effects.

But I have a choice to walk. I walk to raise money for the Vasculitis Foundation so it can send educational literature to more and more physicians about vasculitis, shortening diagnosis time and speeding patients toward time-critical treatment. I walk so the Vasculitis Foundation can fund research projects that aim to find better treatment options and, perhaps, a cure for the disease.

On the Move for a Cure begins at 10:30 a.m. Saturday, Aug. 8, at Katherine Legge Park in Hinsdale. After the walk there will be lunch, lots of fun games, a DJ and raffles for sports tickets, theater tickets, gift baskets and more. To register, visit chicagovasculitis.com. To make a secure donation to the Vasculitis Foundation, please visit vasculitisfoundation.org.