In July 2003, Natalie Puccio-Murdolo got the bad news.
A native of Hoboken and current resident of Bayonne, Puccio-Murdolo was diagnosed with a relatively unknown disease called scleroderma.
Scleroderma is one of those diseases often mistaken for something else until the more severe symptoms set in. Doctors call it a disorder of the connective issues that affects the body’s largest organ: the skin.
June has been named “Scleroderma Month” and people throughout the metropolitan area gathered in Leona’s Overpeck Park on June 4 for a walk to raise awareness about a diseased that in some form or another affects about 300,000 Americans.
The word “scleroderma” is Greek for “hard skin” and while this is true enough for those afflicted with the disease, it often has other effects and is in nearly every case extremely painful.
Often in the earliest stages, doctors mistake the disease for other ailments and so treatment that could help alleviate the suffering and slow the progress of the disease is delayed.
“I didn’t go as nearly as long as other people,” Puccio-Murdolo said. “Some people go for a long time with a misdiagnosis. Mine started right away and so it became clear what I had.”
As with most of those who contract scleroderma, Puccio-Murdolo appears to suffer from a version called Raynaud’s Phenomenon – a circulatory malfunction where the body overreacts to cold and shuts off blood circulation to the extremities, especially the fingers. Her hand is so affected by the hardening of skin that it is folded.
“I’m currently in remission,” she said – and while her hand is still affected, the halted progress of the disease may allow surgery to return the use of her hand.
Scleroderma has two overall forms – localized, which only affects patches of skin, and internal, which affects the body’s major internal organs, such as the lungs or the heart.
The disease is caused by an overproduction of collagen – the glue-like substance that keeps skin looking youthful and helps mend the body when cut. Too much “glue” and the body’s cellular walls become stiff. Three out of every four people with the disease are women.
Puccio-Murdolo was 25 when she was diagnosised with the disease. While scleroderma can be found in any age group, most often the disease becomes evident in people 25 to 55 years of age.
A cut is not just a cut
“Right now, I’m at a high point. I’m in what the doctor’s call remission and I have no organ involvement,” she said. “The trouble I have had is with skin especially over the knuckles.”
She also gets a lot of ulcers. A cut is not merely a cut to her, but often a reason for concern.
“I don’t just put a band-aid on it. I have to use special medicine,” she said.
But even with this, the healing process sometimes means she had to remove the bandage or put it on, depending on what the wound is doing.
“It’s a guessing game,” she said.
For someone with scleroderma, nothing seems to work the way it is supposed to.
Even though the disease was first described in medical literature in 1751 – with a name finally given to the condition in 1836, scleroderma has no cure yet, and sufferers are believed to have some genetic predisposition, although research is still needed to determine the exact causes.
None of Puccio-Murdolo’s relations, living or dead, suffered from any autoimmune diseases.
“From what I gather it is partly genetic,” she said. “Sometimes I feel a little mutant like the X-Men.”
Often the disease is triggered by a traumatic event, some moment when the immune system is at its weakest and allows the dormant gene to activate.
“For 25 years I was healthy,” she said, but knows the moment in her life when the disease began – a bout of pneumonia after which she was never the same.
“Fortunately, my symptoms progressed right away,” she said. Some of these included feeling as if her body was on fire. “I also lost a significant amount of weight.”
While the Scleroderma Foundation – the walk’s sponsors – has been helpful especially in supplying information, Puccio-Murdolo said she got a lot of support from those closest to her, and a network of friends that allowed her to find the therapists she needed.
She is currently involved in an effort to contact local mayors and council presidents in Hudson County asking them to name June as “Scleroderma Month” in order to increase awareness about the disease.
Scleroderma Foundation has a Web site where people can find out more or even donate for research: http://www.scleroderma.org.
An almost normal life
Although not currently employed, Puccio-Murdolo is employable and has worked in the past in a real-estate office.
“I can live a pretty normal life,” she said. “People stare. But on the job I can do office functions,” she said.
For her, such jobs require only modest accommodations such as an extra mouse pad and a chair without arms.
Life around the house is made easier by things such as a Black & Decker jar opener she received as an engagement gift and calls “a God’s send.”
“I have decreased strength in my arms so that I can’t open a jar,” she said.
Other convenient items include an electric can opener and rubber grippies, and silicone-based utensils. She can write, but needs to use very fat pens.
With the disease in remission, Puccio-Murdolo is left with discolored skin and a contracted hand she hopes surgery can help fix.
The original prognosis for surgery was bleak, but the remission now makes that option viable.
Married in February, Puccio-Murdolo’s goal is to have a family.
“I want to fix my hands so I can hold my child,” she said.