POWAY: Man hopes for a cure

Fundraiser planned to help treat rare, fatal disease

By GARY WARTH - Staff Writer | Friday, November 7, 2008 9:08 PM PST ∞

POWAY ---- Mark Buenconsejo would like to watch his grandchildren grow up, hold a paintbrush for his job and put his socks on without a struggle.

They're all things most people take for granted. But Buenconsejo has been diagnosed with systemic scleroderma, a terminal disease that causes skin to tighten, attacks organs and, according to doctors, may have left him with less than five years to live.

"The only way I can put it is, I have good days and bad days," said Buenconsejo, 51, of Poway. "Bad days can be painful and hard. Good days, it almost feels like it's going away. Of course, that's never going to happen."

Buenconsejo, who lives in Poway with his wife, Hilary Petrowsky, may become the first patient to undergo a new procedure to fight the disease with stem cells from a bone-marrow transplant. He still needs a donor and approval from his insurance provider, which last week denied his claim. Buenconsejo said his doctor told him the denial was expected, but they are confident the procedure will be approved after their appeal.

If the treatment is approved, Buenconsejo will move to Seattle for about 3 1/2 months, where he will have to live in a facility run by the hospital.

Forced to give up his job as a house painter because he can no longer hold a paintbrush, Buenconsejo hopes to raise money for transportation and living expenses in Seattle with two benefits, including one scheduled in Poway on Saturday night.

Buenconsejo said he first began to see symptoms of the disease about two years ago, when he noticed blisters on his hands.

"I didn't think much of it," he said. But then he started to see scabs on his hands, and an examination by a rheumatologist, a doctor specializing in joints, soft tissues and connective tissues, identified the scabs as small tumors. The doctor referred him to a specialist at UCLA.

"When he got his lung-capacity test back, they said there's a good scleroderma and a bad scleroderma," Petrowsky said. "Unfortunately, he has the bad scleroderma."

According to the Mayo Clinic's online definition, symptoms of the disease can range from a numbness and pain in fingers and toes to, in the case of systemic scleroderma, a hardening of skin, blood vessels and internal organs.

"I'm at 35 percent lung capacity," Buenconsejo said about the disease's effect on his breathing. "Once it gets down to 30 (percent), you're in the danger zone."

Buenconsejo grew up living an active life in Hawaii, where he met Petrowsky about 10 years ago while she was on vacation. He already was the father of three daughters, who since have given him two grandchildren. The couple married four years ago and moved to Poway, where Petrowsky had lived for 35 years.

All their future plans suddenly were put on hold with the news of Buenconsejo's condition, and the couple began researching the disease and searching for any possible hope.

As Buenconsejo's feet turned purple and his fingers began to stiffen, the couple learned his body was overproducing collagen, causing his skin to harden and his joins to swell. About 300,000 people have some form of scleroderma, and of those, 10 percent to 15 percent have the same type as Buenconsejo.

They also learned of the promising treatment being tested in Seattle.

"I'm very hopeful," Buenconsejo said. "To me, this is it. There's just no two ways about it. I have to get myself up to Seattle to do the bone-marrow transplant."

If the treatment is successful, Petrowsky noted, the test eventually could help other people suffering from the same disease.

Fundraisers to help him participate in the test begin Saturday night at O'Harley's, 13437 Community Road in Poway. Admission is a $20 donation, and the evening's entertainment includes performances by the bands Outer Space Politicians, Useless Idols, Holiday Side and The Full Circle Band. Raffle items include certificates to restaurants and the San Diego Zoo, and the event begins at 7 p.m.

A luau fundraiser is scheduled for 4 to 8 p.m. Nov. 16 at the KPBS studios at San Diego State University, 5200 Campanile Drive. Tickets are $25 in advance and $35 at the door, and entertainment includes a performance by Tahitian dancers, food and a raffle.

Items to be raffled include a kayak, salon treatments, a ride in a firetruck, math tutoring, fishing trips, teeth-whitening treatments, wine, chocolate and many other items.

To buy a ticket or donate an item for the raffle, stop by the Hair Zone, 12845 Poway Road. To reach Buenconsejo, visit his blog at www.mjbscleroderma.blogspot.com or www.myspace.com/cure4markb.

Contact staff writer Gary Warth at (760) 740-5410 or gwarth@nctimes.com.