Raising funds and awareness of a rare disease

By Maggie Fazeli Fard

Community Life, June 24, 2010

Westwood – David Saunders was 21 years old when he was diagnosed with a disease he’d never heard of: primary sclerosing cholangitis (PSC). Doctors discovered the ominous-sounding disease – which affects the bile ducts inside and outside the liver – by accident, while running a set of routine blood tests. While the PSC had already begun to ravage his bile ducts, causing them to slowly become scarred, narrowed and blocked, Saunders felt no pain and exhibited no symptoms. For years, the disease would remain a sort of mystery to the patient and his family.

A decade later, the PSC made its presence known. Saunders, a Westwood native, developed the symptoms his doctors had warned him about: fatigue, abdominal pain, jaundice, and intense itching of the skin, the result of trapped bile “poisoning his liver,” explains his sister, Laura Saunders. Doctors adopted an aggressive, but not uncommon, course of action to manage the rare disease: medication coupled with endoscopic stents, artificial tubes used to prop the bile ducts open. According to Laura, Saunders has undergone nearly 40 stent replacements in the past decade, averaging three or four replacements each year. But their effectiveness slowly waned: last summer, the stents failed and had to be replaced twice in one month.

Twenty years after his initial diagnosis, 41-year-old Saunders reached a crossroads in his treatment: continue to manage his symptoms in private, but risk further damage to his liver – and eventual liver failure – or undergo a liver transplant.

“He’s had this bile duct disease for 20 years. We really needed a permanent solution,” says his sister Laura. “A transplant is the only definitive treatment.”

Saunders was placed on a transplant list at New York University Medical Center, but because of the dearth of cadaver organs – organs harvested from dead bodies – his best bet meant finding a live organ donor. His sister, Laura, was the first family member in line to be tested and initial exams indicate that she will be a positive match.

“The liver is the only organ in the body that can regenerate itself,” Laura explains. “Two-thirds of the donor’s liver, my liver, go into the recipient, David. It’ll regenerate in his body and in mine.”

But there’s still testing to be done before doctors can say that Laura is a viable donor and no date for the operation has been set. “We’re the same blood type and we have the same blood clotting factor,” says Laura. “I’m in good health. But the doctors need to make sure I’m in very good health.”

Still, the Saunders family is confident that a liver transplant is near on the horizon and on Saturday, June 5, they held a casual B.Y.O.B. fundraising event at the Westwood Community Center. The party featured snacks, including soft drinks, chips and pretzels, as well as the spirit of “friends helping friends,” according to the invitation.

Last week’s event was attended by Saunders’s family – including his sister, Laura, and their four other brothers and sisters; Saunders’s wife, Lauren, and their four children; and friends, neighbors and strangers from the Pascack Valley community.

“We had an excellent response. But my brother – he was uncomfortable with all the attention,” Laura says with a soft laugh. “David is a very private person, but the response from our neighbors has been incredible.”

The money raised will help offset post-surgery expenses not covered by Saunders’s insurance, including rehabilitation and medication to prevent his body from rejecting its new liver, as well as make up for lost wages since he will have to take time off from his job at PSE&G. (Saunders’s recovery will take about six months, while Laura’s will take about three.)

“It’s a scary time, certainly for my brother but for the whole family,” says Laura. “We’re just trying to rally together.”

The family continues to accept donations, but Laura notes that awareness is an equally important goal.

“The subtext here is there is such a need for organ donation,” she says. “If there were enough cadaver livers, I wouldn’t have to donate a part of me.”

For more information about Primary Sclerosing Cholangitis, visit pscpartners.org. To contribute money to the Saunders family, contact Amy Saunders McDevitt at 201-666-0554.

* Primary Sclerosing Cholangitis (PSC) causes the bile ducts around the liver to narrow and eventually become blocked. The trapped bile damages the liver.

* PSC predominantly affects men who are 30 to 40 years old.

* PSC is a rare disease, affecting 21 per 100,000 men and 6 per 100,000 women.

* PSC is not contagious and has no known cause, though genetic, autoimmune and environmental factors may contribute to its onset.

* Symptoms include jaundice, intense itchiness, fatigue and abdominal pain.

* Treatment includes medication, endoscopic stents and liver transplant.

Source: PSC Partners

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