‘You Felt You Were Walking on Pins or Needles’

By Dennis Thompson
HealthDay Reporter

(HealthDay News) -- Josephine Attyany first started feeling achy and tired back about 1980, a general sense of discomfort.

Then, she started having trouble swallowing.

"It just seemed like it took a long time for anything to go down," said Attyany, now 68, and living in Inglewood, Calif. There was a rough feeling in her throat, as though a potato chip was stuck there, and only a cup of hot tea or coffee could wash it down.

Attyany also started having difficulty walking, as the bottoms of her feet felt like they were burning. "You felt you were walking on pins or needles," she said. "It was just awful."

Two years later, after a couple of hospitalizations in which doctors couldn't track down the source of her distress, a surgeon sent her to see a UCLA rheumatologist.

The diagnosis: scleroderma.

"He told me that I had something that was not very common and that sometimes can be fatal, but they didn't know where I was along the path," Attyany recalled. "I just started crying and asking, 'What is going to happen?' They couldn't promise anything."

Within a year, her kidneys showed the effects of scleroderma, and she developed renal failure.

"Even if I drank water, I was throwing it up," she said. "The doctor told me usually this is fatal. We had someone come from the church, because I thought that was it."

Her physicians put Attyany on ACE inhibitors, drugs typically used to treat congestive heart failure and high blood pressure. They worked, saving both her kidneys.

Since then, Attyany has been on medication that has shielded her internal organs from the ravages of scleroderma, even as her outward appearance has been changed by the disease.

The skin of her face is now taut, leading some to ask how she's managed to avoid wrinkles. Because of the skin tightening, all of her teeth are beginning to group together. Her hands also are crooked.

Her joints are painful, and her feet still burn. But she's lived more than 25 years with the disease, which is more than she expected.

"My life was, naturally, turned around, but I've been able to sustain a life that's livable," Attyany said.

Still, she misses running. She used to run three miles every other day. And she also misses being able to dress up and wear makeup.

"It itches so bad, and I don't want to be scratching, because I'm afraid of causing an infection," she said.

But Attyany gets to work with children in her church, and she participates in walk-a-thons and other scleroderma-awareness functions.

She's even gotten used to the stares of other people, but that took a long time.

"Many times I felt like saying, 'What are you looking at? Didn't your mother teach you not to stare?' " Attyany said. "But that's past now."

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