Cape Central librarian copes with rare autoimmune disease

Cape Girardeau Central High School librarian Sara Kiplinger found it hard to swallow food. Several of her fingers turned purple.

"When I would get cold, it would get worse," she recalled.

Doctors initially thought she had acid reflux or maybe an ulcer. She was put on different medicines, but her symptoms worsened.

She lost her appetite and lost weight.

Kiplinger said she experienced the first symptoms last July.

She saw several different doctors, but none of them could pinpoint her illness.

"I went through at least five doctors before I got to someone who diagnosed it as scleroderma," she said. "There are so many doctors that have never even heard of it."

In November, Kiplinger visited a St. Louis rheumatologist.

"She ordered a lot of different tests," Kiplinger recalled Thursday as she sat in the Cape Girardeau Central High School library.

"They were doing CT scans, MRIs, X-rays and blood tests," Kiplinger said of the battery of tests she endured.

In December, the rheumatologist for the first time mentioned the possibility she had scleroderma, Kiplinger said.

By January, the doctor was "pretty sure" of the diagnosis, she recalled.

In February, the diagnosis was confirmed.

Kiplinger suffers from the rare, autoimmune illness.

"Only about 300,000 people in the U.S. have it, and I know most people have never even heard of it," she said.

"It is one of those invisible illnesses," she added.

Kiplinger said she doesn't know whether anyone else in area has the chronic disease, which involves the hardening and tightening of the skin and connective tissues.

In some people, it affects only the skin. But in many cases, it can affect blood vessels, internal organs and the digestive tract, according to online information from the Mayo Clinic.

It affects women more often than men and typically occurs between the ages of 30 and 50, the Mayo Clinic said.

Kiplinger said there is no cure for the disease, but various medicines can ease symptoms.

Scleroderma causes the body to produce too much collagen, a protein that makes up connective tissues such as the skin. Too much collagen can make the skin stretch, harden and thicken and also can damage internal organs such as the heart, lungs and kidneys.

Over the months before she was diagnosed, Kiplinger's health declined.

She found it almost impossible to eat.

"By February and March, I was pretty much on a liquid diet," she said.

Kiplinger said she lost 75 pounds over a six-month period ending in April.

She also came down with pneumonia.

Her rheumatologist, she said, worried "I was dying."

Kiplinger, who lives in Scott City, said she missed more than 20 days of work during the past school year.

Her health has rebounded a little, but it remains a struggle.

"On a daily basis, I feel like I kind of have the flu," she said, describing her symptoms. "If I put on makeup, it is a good day."

Kiplinger said, "It feels like I am 80 instead of 34."

She takes 18 pills a day, including 10 different medicines.

She takes steroids as well as heavy doses of a medication that depresses her immune system.

"They are pretty much shutting down my immune system," she said.

As a result, she tries to keep her distance from people who are sick, she said.

Kiplinger said she also take a generic form of Viagra three times a day to circulate the blood in her hands better.

But she still experiences discomfort.

"My hands are swollen all the time," Kiplinger said, adding she can't open bottles by herself.

"I get ulcers on my fingertips," she said.

Scleroderma also has affected her lungs. She said she has experienced a 20 percent decrease in her lung capacity.

Kiplinger is on medicine to keep her blood pressure in check and prevent damage to her kidneys.

She has limited strength.

"I can't lift more than a couple pounds," she said. "A gallon of milk is hard for me to lift."

Despite the constant challenges of her disease, Kiplinger said she plans to continue serving as the high-school librarian.

She said she hopes her experience will inform others about the disease.

"I just want people to know about it," she said.

mbliss@semissourian.com

(573) 388-3641