Sclero-What?

 

       When riding RAGBRAI, there are certain elements that riders endure. Wind, cold, heat, rain, and more.  These are elements that make it hard for people living with scleroderma.

       For Barb, member of sclero-what, those elements are something that she cannot take a chance with.

       “If it was not for people opening up their homes, I would not be able to ride RAGBRAI, because of the cold nights and unpredictable weather,” Barb said as she raised her hands explaining that even air conditioning bothers her.

       “I have limited systematic scleroderma and when I began training for RAGBRAI, I discovered I only have 45 percent of my lung capacity. Due to this I am only riding 3 days of RAGBRAI,” Barb continued.

       Eleven years ago, Barb’s mother set up a fundraiser during Sweet corn days, and now after years of education and having floats in the parade and more, Barb feels her community is becoming aware of the disease. A few years ago, Barb was united with Taytum Bell and her family from Sigourney, and together the families have grown to have a great bond.

       Scleroderma is an autoimmune disease that normally occurs between the ages of 30 and 50, but for both Taytum and Barb, their diagnosis came much earlier.  Barb was diagnosed in her early 20s and Taytum as a child.  Scleroderma is the overbuilding of collagen. The collagen builds up and hardens. In some, scleroderma only affects the skin, and in others it affects internal organs.

       Team Sclero-What currently is composed of five members, Barb and her family and friends, including Brittany who traveled from Colorado to ride with the team.  Barb stopped by to spend the night in Sigourney with Taytum and the home of Dick and Barb Coffman.

       Earlier this year, before the Scleroderma walk, Taytum’s father, David, had to shave his beard as Taytum had raised over $2,000 towards the research of scleroderma.

       “I helped Taytum with her final donation,” Barb said, recalling the day that she herself had a friend who shaved her head supporting her goal. “It is amazing to see a community that is aware of this disease because of Taytum. Most people in the Sigourney community probably think this is a disease that affects children, when truth is that it very rarely affects children.”

       If you are interested in learning more about scleroderma and Barb’s team, you can look up https://www.facebook.com/ScleroWHATAdventures1.