By Ashley M. Casey
Like many people, Eleanor Single had never even heard of scleroderma until her daughter, Dawn Erikson, was diagnosed with the condition, a connective tissue disorder that causes scar tissue to build up and harden in the skin and other organs.
Since Dawn’s death from scleroderma complications, Single has worked to raise awareness and funds for the autoimmune disorder through the “Stepping Out to Cure Scleroderma” walk.
The Scleroderma Foundation’s Tri-State chapter is hosting the 10th annual “Stepping Out to Cure Scleroderma” walk June 8 at Onondaga Lake Park in Liverpool. It is one of many “Stepping Out” events in New York state this month.
Single first participated in the walk about 2007 at the urging of her sister and brother-in-law, Char and Jim Smith.
Single and the Smiths named their Stepping Out team “Forever Dawn” and deck themselves out in purple — one of Dawn’s favorite colors — each year.
The family gathers donations and creates gift baskets for drawings at Stepping Out. Single said raising research money and spreading the word about scleroderma — which has no known cause and no cure — has helped her cope with losing her daughter.
“She’s a very special person. She did what she wanted to do and if nobody liked it, too bad,” Single recalled of Dawn’s independent spirit.
Single said it took a long time for doctors to diagnose Dawn, who was quiet about her symptoms. “I’m sure when she started, she didn’t say anything to me,” Single said.
An employee of Nestlé, Dawn encountered problems at work when her supervisors didn’t understand her painful condition.
“They were mean to her at work while she was suffering,” Single remembered. “They had her painting — this motion with (her) hands was very difficult for her. She was criticized for that by her supervisor. She might not have been pulling her weight.”
At age 45, Dawn passed away at St. Joseph’s Hospital Health Center in Syracuse from complications of her disease in 2005.
“For some people with scleroderma, they live a normal life and they die of natural causes other than scleroderma,” Single said.
Dawn had a more severe type of the disease called diffuse scleroderma, which progresses rapidly and is more likely to cause “fibrous hardening of internal organs,” according to the Scleroderma Foundation.
Stepping Out to Cure Scleroderma takes place June 8 in the Willow Bay area of Onondaga Lake Park in Liverpool. Registration begins at 9 a.m. and the walk kicks off at 10 a.m.
To register for the walk or donate to a team, visit walks.sclerodermatristate.org and click on “Syracuse.”
People ages 16 and older can pre-register for the event online for $20 until June 6. The pre-registration fee for children ages 5 to 15 is $5, and children under 5 get in free. All pre-registered participants receive a commemorative T-shirt. Register in person on the day of the walk for $25.
For more information about the Tri-State chapter of the Scleroderma Foundation or about the walk, call 800-867-0885 or visit sclerodermatristate.org.
Scleroderma by the numbers
- Scleroderma is a chronic, often progressive autoimmune disorder that causes scar tissue to build up in the body’s connective tissue. There is no known cause, but it is related to an overproduction of collagen.
- Symptoms include: thickening and hardening of skin, problems with swallowing and acid reflux, Raynaud’s phenomenon (severe circulation problems in cold or stress), and problems with the heart, lungs or kidneys
- 300,000 people in the U.S. have scleroderma.Women are four times more likely than men to be affected.
- Scleroderma can develop at any age, but most often appears between the ages of 25 and 55.
- There is no cure, but medications are available to control gastrointestinal problems and reduce the immune system’s response.