Rare South African diseases

Kucharski in the hospital after surgery, October 2008. Photo courtesy Sarah Kucharski.A North Carolina woman’s rare disease leads her on a medical odyssey that lands her in the forefront of patients using the web to change medicine.

By Rose Hoban

Sarah Kucharski walked into student health during her senior year of college for a routine checkup, and walked out with blood pressure medication because her reading was sky-high.

“And that was weird because I’d always had low blood pressure, ” Kucharski said.

That unusual blood pressure reading started Kucharski on a medical odyssey that lead her to multiple surgeries, a stroke at age 28 and eventually, diagnosis with an extremely rare disease. And now, Kucharski has found herself traveling the world in the vanguard of social media activism for patients, even as she maintains her roots in the mountains of western North Carolina.

Arteries for people with FMD take on a distinctiveAlways had symptoms

“I’d have excruciating stomach pain, problems with digestion, ” she said. “Eventually I had to have my gall bladder removed when I was 17. I did have gall stones, but who knows if the FMD played a part in that.”

No one knows what causes fibromuscular dysplasia, which causes the cells lining a person’s arteries to grow abnormally, resulting in narrowing of the arteries in some places, and allowing the arteries to bulge out in others, creating a distinctive “string of beads” appearance on scans. No one knows how many people have FMD, which most often affects women. Only several hundred people in the US have signed onto a FMD disease registry.

Kucharski had overgrowth of cells in the artery feeding her left kidney, leaving it more than 90 percent blocked.

Kidneys respond to reduced blood flow by producing hormones that tell the rest of the body to do everything possible to pump up blood pressure, in an effort to push more blood to that kidney.Kucharski (second right) at the Doctors 2.0 and You conference in 2012. She was on a panel with other patient activists from Greece and France. That’s what was happening to Kucharski, and so none of the medications she took were effective at lowering her dangerously high blood pressure, because the real problem was a blocked artery.

Kucharski struggled with her blood pressure for several years. In 2005, just weeks before her 25th birthday, Kucharski found herself having surgery to expand the artery to her left kidney. The surgeons also opened up two other arteries feeding parts of her intestines. Those arteries were completely blocked.

“It was like a light switch. All my body needed was restored blood flow, ” Kucharski said. “The blood pressure resolved and all the pain I’d been having all my life was gone.”

The problems resolved for a short time, but they weren’t over, and Kucharski still didn’t know what was causing them. She was back home in Haywood County, where she got a job and got married, all the while acquiring new, strange symptoms.

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