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Watch now: Niantic woman battles rare disease

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June is Scleroderma Awareness Month

NIANTIC — For Aissa Norris, 61, the journey from showing symptoms to receiving a diagnosis was anything but a straight shot. 

In 2015, Norris was principal at Pershing Early Learning Center in Decatur — a job of managing 700 kids and 70 staff that, when coupled with her and her husband's business of running an event venue in Niantic, meant she "was on the go all of the time." 

"An 80- to 100-hour week was not unusual for me," Norris said. 

While she enjoyed her work, the principal position was stressful — and that stress is initially what she blamed when strange symptoms began to bother her, she said. 

"I just noticed my hands weren't working. I had severe pain that would keep me up, severe fatigue and I started having a big variety of symptoms of tightness in my skin and more of an arthritic condition, hurting everywhere and not being able to get out of that," she said. 

Ultimately, she stepped down from being principal, hoping an easing of stress would relieve the symptoms. Instead, they got worse. 

"It was to the point that I could no longer brush my teeth, couldn't get my hand to my mouth. I wasn't capable of bathing myself. It turned to where the knob on a light switch — it hurt terribly to even have my fingers touch it," she said. "Something definitely was not right." 

While her symptoms worsened and left her more confused, Norris estimates she saw six doctors, but still didn't have a definitive answer for what her body was doing. While they wondered, Norris lost her ability to walk. 

"I was finally sent by my general practitioner to occupational therapy to try to help me maintain what mobility I had," she said. "I worked for about six months with an occupational therapist and she said, 'You know, I think you might have a disease called scleroderma.'" 

When the therapist mentioned scleroderma to her, Norris recognized the disease from her own research, remembering it as a rare illness that hardens and tightens the skin and other, connective tissues, according to Johns Hopkins University. An autoimmune disorder, the disease prompts the body to produce collagen as if there was an injury that needs repair. But the cells don't turn off, produce too much collagen in tissues, and can "prevent the body's organs from functioning normally." 

Fewer than 500,000 in the U.S. are believed to have the disease.

For some, the experience is limited only to the skin. For others, harm extends to internal organs or the digestive tract. For all who receive the diagnosis, the disease is chronic, though the severity of the illness can vary from person to person. 

It cannot be cured, but diagnosed properly, it can be treated. 

Getting the diagnosis, as Norris learned, can be one of the more challenging aspects of managing the disease. 

After hearing from her occupational therapist, Norris went back to her doctor, who said it was possible and planned to send her to the Mayo Clinic in Rochester, Minn. 

"That was like in November and I couldn't get there until February and every day was getting worse," she said. "From what I knew about scleroderma, if it wasn't treated rapidly, it is terminal in some forms. There are many kinds of scleroderma, but from the symptoms I was having, it was possible I had a pretty bad case." 

Norris went back online, where she found the national Scleroderma Foundation, which then led to her to a Chicago-based chapter of the advocacy group. From there, Norris learned she could see a doctor who specialized in the autoimmune disorder and rheumatology disease at Northwestern University. 

"I walked in and the rheumatologist looked at me and said, 'Well, you're a classic case of scleroderma.' I froze in my spot," she said. "'I said, 'Just give me one minute, I have to cry for a second — I'm scared to death but I'm so thankful that after searching, somebody can just look at me and say, ''This is what you have.''" 

Through the Scleroderma Foundation Greater Chicago Chapter, Norris learned of support groups and clinical trials she could attend as a result of her diagnosis. 

"As I talked to people on the phone, I found out there were shortcuts and things," she said. "Just for someone to talk to you one the phone was unbelievable — to say, 'God, I understand that. I know how that feels.'" 

Stephanie Somers Gresh, executive director of the Chicago chapter, said that's exactly why the group exists. More than a decade ago, her own mother was diagnosed with scleroderma, but like Norris, neither her mother nor anyone in her family had heard of the disease. 

"We found the foundation and decided that we wanted to do something about it," Gresh saud. "We just thought there is not enough awareness of this." 

Gresh started as a volunteer 13 years ago and for the past eight has been the chapter's executive director.

"I just found the work very important and meaningful," she said. "I want to continue to help and shed light on this cause. (Getting a diagnosis) is definitely part of the issue." 

The foundation aims to allow opportunities for access to clinical research trials, advanced education for medical professionals so they can better diagnose the disease when they see it and run support groups so people don't have to find all of their information online. 

Norris said the knowledge and the support of others has changed her life.

Her disease remains a chronic condition — for those who have it, there is no true cure that eradicates scleroderma. But she's been part of trials, learned to live with it, and began leading a support group to share her story with others, something she plans to do for as long as she can so that fewer people have to live with the uncertainty that she did.

"You still have to travel the path — you don't get to skip the path, but you're not walking alone," she said. "I think that is a big help and finding, getting people to things quickly is so important for any chronic condition or terminal condition.

"We're all dying. We're all going to die. But you can be empowered and live today, for today, in a much happier fashion than being afraid. I think that's very important for people." 


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