Walk Cougars field, raise funds for scleroderma research
An event Sunday at Fifth Third Ballpark in Geneva aims to raise funds for and awareness about a chronic, progressive, autoimmune disease some people have never heard of - scleroderma.
The Scleroderma Foundation of Greater Chicago will hold its second annual Reason to Rock fun walk and 1950s-themed festival on July 26 at the ballpark, home of the Kane County Cougars.
The day begins at noon with a one-mile fun walk around the baseball field. Walkers can participate individually or as a team, and are encouraged to wear 1950s-style attire. Ozzie, the Kane County Cougars mascot will cheer the walkers on. All registered walkers receive a T-shirt.
The festival follows the walk with food, soft drinks and beer from local restaurants and sponsors, including Two Brothers Roundhouse. There also will be '50s music, activities for kids and adults, as well as a classic car show. Attendees will get to vote for their favorite car.
About scleroderma
Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body. The disease, which literally means "hard skin," can cause thickening and tightening of the skin. In some cases it causes serious damage to internal organs including the heart, lungs, kidneys, esophagus and gastrointestinal tract. These organs may slowly harden until they become ineffective.
Some medicines and treatments can help with certain symptoms, but there is no cure for scleroderma. The disease affects three to four times as many women as men.
Personal stories
Two local participants in the event share their stories of living with scleroderma.
Nancy Baldwin, Westmont
Oftentimes, people have never heard of scleroderma, until you meet someone who has it or you yourself are diagnosed. I was diagnosed in 2004. My case was extremely aggressive. Within a matter of only a few months, I went from a healthy woman who enjoyed exercising vigorously, participating in all sorts of classes and strength training, to barely being able to walk up stairs or move without extreme pain. My hands were severely affected and soon I could no longer do simple things like button blouses, use zippers, open water bottles (or any bottles), pull up socks, tie my workout shoes, hold coins or even swish a towel across my body after a shower. The hard skin restricts movement.
I was treated with all of the usual medicines available at that point in time, including steroids and chemotherapy drugs, but nothing worked. Fortunately, living in the Chicago area with many of the country's best hospitals, I was able to have an experimental protocol at Northwestern Memorial Hospital in 2005 - a stem cell transplant, in which I harvested my own stem cells. With chemotherapy, immunosuppressive drugs and a strong dose of faith, my symptoms began to improve and even reverse. Hard skin became soft and normal again and joints with inflammation settled down within the first year. I am not cured, but I am very much improved.
This illness is consuming, sneaky and destructive. It is surprising how quickly it changes you. The sense you have of yourself becomes entirely different; but for me, all the more essential to reach out to others who are newly diagnosed and to spread the word about this devastating, even fatal disease.
A most valuable resource to me was the Scleroderma Foundation - their mission is to provide support, education and research to patients and their families. Their information is accurate, reliable and up to date. The Greater Chicago Chapter holds regularly scheduled Patient Education Workshops at least twice a year in which patients have access to some of the most experienced doctors and teams of physicians working primarily with scleroderma and other closely related autoimmune illnesses.
Marianne Napoli, Geneva
My first symptoms occurred in August of 2006. The tips of my fingers had wounds and my hands were swollen and stiff. My primary physician prescribed a beta blocker. When in one week I was doing worse, he sent me to a rheumatologist and a hand specialist. By the time I saw them, two of my fingers were developing ulcers.
The rheumatologist diagnosed it as vasculitis. I call it a catchall for any autoimmune disease. I spent weeks seeing different physicians and having test after test. Finally in October 2006, my husband, Jack; daughter, Jeanine, and I went to Johns Hopkins in Baltimore, Maryland. In one day I had a diagnosis, all the tests for scleroderma and a 72-hour infusion of a drug called Flolan, which likely saved my other fingers. In November I had the first digit of a finger on each hand amputated.
This disease is very painful and affects your entire body. Pain meds are ineffective. Without the support of my wonderful family, friends, the scleroderma specialists at Northwestern and the Scleroderma Foundation, I would not be as stable as I am today.
For details or information on how you can help, visit www.scleroderma.org.
If you go
What: Reason to Rock Fun Walk and 1950s-themed festival, featuring a one-mile fun walk, music, activities and a classic car show
When: Noon Sunday, July 26
Where: Fifth Third Ballpark, 34W002 Cherry Lane, Geneva
Tickets: $30 for adults, $15 for youth ages 9-18, and $5 for children 8 and younger. Food, beverages and activities included.
Details: Contact the Scleroderma Foundation of Greater Chicago at (312) 660-1131 or <a href="http://www.reasontorock.org">www.reasontorock.org</a>