‘Sclero-WHAT?’: Friends spread awareness for rare disease at RAGBRAI

  • 27 July, 2018

Twenty-four years ago, Barb Heenan was told she would only live a few more years after she was diagnosed with a rare illness.

This year, she is riding the Register’s Annual Great Bicycle Ride Across Iowa for the second year in a row to raise awareness of scleroderma, all because the encouragement of her best friend, Randine Crouch. Scleroderma is a chronic disease that causes hardening of tissues and skin, according to the Scleroderma Foundation.

“No cause, no cure,” Heenan said. “Once you’re diagnosed you live with it for as long as you can.”

Heenan has systemic limited scleroderma, which affects internal organs. She said limited is the lesser of the two evils, but she’s known people with diffuse systemic scleroderma who have lived a long time as well. Diffuse tends to more rapidly tighten the skin and affects more areas of the skin. People with diffuse also have a higher risk of hardening of the internal organs.

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An estimated 300,000 Americans are affected by the disease, according to the Scleroderman Foundation.

“It’s rare, but honestly, but it’s not,” Heenan said. “Once you start talking about it, you’ll find out a lot of people do have it, and it’s actually more common than multiple sclerosis and muscular dystrophy.”

Heenan said Crouch has been with her through it all. The two met in seventh grade and maintained their friendship into adulthood.

Crouch, who was her college roommate and a part of her wedding party, was the one who drove her to the hospital when she was diagnosed.

“It’s very fortunate,” Crouch said. “You wish all kids like at the age of 13 would find that friend to always like be there.

Two summers ago, Crouch said they should do something to raise awareness for scleroderma. Heenan hadn’t even heard of the illness until she was diagnosed. They decided to do a blog-style video every day of their adventures. They gained so many followers they decided to create their own page rather than post on their personal pages.

“(The videos) were the brain child of Randine,” Heenan said. “Randine wanted to create some sort of scleroderma awareness, and I thought that was the kookiest idea I’ve ever heard, and I’m not a video person, and I’m like, ‘No, I don’t want to do it,’ and she’s like, ‘Come on, it’ll be fun.’”

Now on their third year, the friends post on a Facebook page called “Sclero-WHAT? Adventures with Barb and Randine” which is nearing 600 followers. They don’t do it to fundraise, but simply to raise awareness posting from the Scleroderma Conference in Arizona and about fellow “scleroderma sisters.”

“She just has such a strong will to live and capture and do everything she can do,” Crouch said.

Last year, they decided RAGBRAI would be their big adventure, as the route went through their hometown, Estherville, Iowa. That year, Heenan rode.

“A lot of people had told me, ‘You can’t do it,’” Heenan said. “And I said, ‘Yes, I can.’”

They liked it enough to come back a second year and up the days from two to three. This year, someone approached Crouch and her brother and yelled, “Sclero-What?” When Crouch’s brother told them to follow their Facebook page, they said they started following after seeing them at last year’s RAGBRAI.

When asked what her main motivation for riding was, Heenan said, “Honestly, for my health.”

“I think that’s what it’s all about, keeping your joints moving,” Heenan said. “Whether it’s scleroderma or whatever you have, I think you have to keep moving, or I don’t like the other option, so that’s not an option for me.”

Heenan wore a headband saying “Slow is the new fast.” Her slower pace and breaks in between are what help her make it to the finish with her lung capacity at 45 percent.

She said she can’t push herself up hills like others since her lungs won’t produce more oxygen. Once she runs out, she will pass out. But, she said, these breaks give her the opportunity to meet new people along the ride.

Another symptom that makes RAGBRAI challenging is Raynaud’s disease, which causes extreme numbness, lack of circularation and color changes to parts of the body in response to cold temperatures or stress, often in the fingers and toes, according to Mayo Clinic. Heenan said this makes cold mornings difficult.

Despite these obstacles, Heenan reached her goal.

“There’s something to be said for attitude and positivity and knowing you can handle whatever God gives you,” Heenan said.

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