Tonawanda News

June 16, 2013

North Tonawanda resident tells story for scleroderma awareness month

By Danielle Haynes
The Tonawanda News

— For Laurie McIntyre, it all started with some heart palpitations.

The North Tonawanda resident had suffered from fibromyalgia, an auto-immune disease that can cause pain and many other medical symptoms.

“Anytime something is going on with me, I just blame it on the fibromyalgia,” McIntyre said. “But I just had this feeling in my chest where every time I was breathing deeply, it hurt. I knew something was different.”

She landed in the hospital for about four days and eventually developed an itchy rash on her legs. 

After lots of blood work and visits with a new doctor, the problem was finally revealed. McIntyre was diagnosed with scleroderma approximately three months ago.

“I was like, ‘Sclera-what?’ “ McIntyre recalled of that first doctor’s visit when she was diagnosed.

She knew nothing of the disease — also an auto-immune disorder — and even though she’s still in the early stages of determining the best course of treatment, she knew she had to seize the opportunity to help educate others this June, Scleroderma Awareness Month, by sharing her story.

Scleroderma — which literally translates to “hard skin” — is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body, according to the Scleroderma Foundation website. The disorder can cause a thickening and tightening of the skin, in addition to serious damage to internal organs like the lungs, heart, kidneys, esophagus and gastrointestinal tract. 

As the disease progresses, it can scar organs, leading to organ failure and death.

McIntyre said she’s still in the early stages of the disease right now and doesn’t have many visible, outward signs of its progression. 

“As far as my skin goes, I’ve had tightening of my skin on my legs and I use a real good lotion and that’s OK,” she said. “I have a patch on my chin that’s real dry.”

“Other than that I’ve been going through all different types of testing on my organs. My digestive track is being affected ... my kidneys and liver are good,” she added.

Mostly, she says, her energy level has been affected so much, she’s had to cut back to working just two days a week.

“The pain ... I’m just exhausted. There are days it’s hard to drag myself out of bed,” McIntyre said, adding that it’s often difficult for people to visually recognize that she’s ill. 

“To look at me, I look like I’m OK. A rare chronic illness like this, along with the fibromyalgia, it’s so hard because when I have those days when I just can’t do anything, to look at me it’s not like cancer where you can see they’re really sick,” she said.

“The good thing is that we’ve caught it early,” she said of the disorder, which has no cure but can be treated.

For now, McIntyre said she’s considering undergoing treatment with an antibiotic protocol, something that’s not normally prescribed for scleroderma patients, but one she said some doctors have found success with. 

For more information about scleroderma, visit www.scleroderma.org.

 

 

SCLERODERMA FACTS • Approximately 300,000 Americans have scleroderma • An estimated 80,000 to 100,000 people have systemic scleroderma • Approximately three to four times more women develop scleroderma • Scleroderma can affect every age group, but the onset is most frequent between 25 and 55 • 90 percent of people living with systemic scleroderma also have Raynaud Phenomenon, the constriction of blood vessels in the ears, nose, fingers or toes • Lung disease is a major cause of scleroderma-related deaths.

 

Contact Sunday Lifestyle editor Danielle Haynes at 693-1000, ext. 4116 or follow her on Twitter at @DanielleHaynes1.