HILL AIR FORCE BASE, UT -- Tech. Sgt. Larry Lewis and his family have a phrase - "the new normal." It's their way of looking on the bright side when they're made to change their routine. And since Sergeant Lewis' 12-year-old daughter, Khloe, was diagnosed with scleroderma last year, there have been a lot of changes. 

"Scleroderma is a disease that, because of increased amounts of collagen, causes areas of connective tissue in your body to lose elasticity, stiffen and harden," said Sergeant Lewis, Chief of Personnel Relocations in the 419th Military Personnel Flight. 

Khloe has a localized form of the disease, which only affects certain areas of the body, and was familiar with the disease even before she was diagnosed. Her grandmother, Sergeant Lewis' mother-in-law, also suffered from scleroderma. Sergeant Lewis noticed hardened skin on Khloe's hands, something he recognized immediately because of his mother-in-law's similar symptoms. 

"It was an ironic blessing for us," Sergeant Lewis said. "Although there is no biological connection, as Khloe was adopted, it started the diagnosis process earlier than it would have without our prior exposure to the disease. It prepared us in a way." 

Although there is no known cure for scleroderma, Khloe takes up to 21 pills per day to help ease some of its symptoms and those of its sister diseases. Khloe also has Raynaud's disease and pulmonary hypertension. She sees both a physical therapist and an occupational therapist to maintain her flexibility. 

"Right now I get tired very easily, don't have much strength, can't grasp or hold things that are smaller, and I have to be careful with eating because food can get stuck in my throat," Khloe said. 

These problems can either continue to get worse, or may go into remission, sometimes only to appear later. 

"Scleroderma is a disease of contradictions," Sergeant Lewis said. "Some patients deal with a very slow and gradual progression of the disease, while in others the disease has led rapidly from a diagnosis to death in a matter of a few years." 

Sergeant Lewis wants to promote awareness of the disease, and took the opportunity with his Air Force Reserve unit in June, which is Scleroderma Awareness Month, by passing out flyers and brochures. He also invited his coworkers to join him for an awareness run/walk that took place in Syracuse Saturday morning. 

"My Reserve family is being very supportive," Sergeant Lewis said. "They are willing to let me have the time off for any appointments with doctors, and also supporting us as we work with Make-A-Wish Foundation to fulfill our daughter's wish of having a family vacation to Disney World this fall." 

They are also willing to listen to him talk about the disease and its effects on his family.
"More awareness means more possibilities," Sergeant Lewis said. "Letting people know about the disease helps raise funds to find a cure, but also educates those who may not recognize the symptoms in themselves or their families." 

The number of people with muscular dystrophy and multiple sclerosis is equal to those diagnosed with scleroderma, Sergeant Lewis said. But scleroderma is less known. He said support groups and community events, like the awareness run/walk that drew about 200 people, are good for Khloe. 

"Seeing and interacting with other people affected by Scleroderma helps her feel less isolated with this disease," he said. Khloe is one of only about 3,000 in the United States with her form of scleroderma, which is more common in adults. 

Khloe met up with her pen pal Saturday for the run/walk. They are the only two children in Utah with their form of the disease, Sergeant Lewis said. 

"I want there to be a cure soon to help me and everyone else affected by this disease, so we can all look forward to each and every day of our lives," Khloe said.