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Tigard man turns to stem cell treatment to battle disease that twisted up his life

by: TIMES PHOTO: JONATHAN HOUSE -  Erion Moore works with physical therapist Katie Carr to regain strength after a stem cell transplant to help with his scleroderma, a rare disease that causes the skin to harden.When Erion Moore II was in college, his friend’s called him “Big Chocolate.”

Standing 6-foot-6, and sporting an impressive afro, Moore was well known at Southern Oregon University for his skills on the basketball court.

But today, the 29-year-old Tigard resident is almost unrecognizable from the athlete in his heyday.

He went from racing across a basketball court to being unable to stand, bathe himself or drive. It is difficult for him to open his mouth. He is unable to move his fingers, which have curled into balls.

A few years ago his knuckles burst like split sausages from the pressure on his skin.

“If I had a small knick or scratches it would just open up,” Moore said. “A cut would go down to the bone because everything is so tight.”

Moore was diagnosed in 2008 with a rare auto-immune disease called scleroderma. It is a crippling and deadly disease with no cure that results in a hardening of the skin and internal organs

But after living with the disease for six years, Moore believes he has found a way to get his life back. Working with doctors at Northwestern University’s Feinberg School of Medicine in Chicago, Moore underwent a risky stem cell transplant that could, if successful, give him back what he wants most: His body.

Unlike a normally functioning immune system, Moore’s immune system causes cells to produce too much collagen in the skin and organs, which harden and thicken.

“It’s attacking your own body,” Moore said. “Your own body doesn’t recognize you.”

But when it comes to scleroderma patients, Moore is one of the lucky ones. The disease attacks the skin and internal organs, but Moore’s internal organs remained untouched.

Moore’s transplant is part of an ongoing study at Northwestern involving stem cell transplants in autoimmune diseases.

by: SUBMITTED PHOTO - Moore poses with his doctors in Chicago after his stem cell transplant.Moore’s doctor, Richard Burt, made headlines in 2010 for similar stem cell work with people with Type 1 Diabetes. It’s an experimental and potentially dangerous procedure, leaving patients open to infection. Stem cells were removed from Moore’s bloodstream, and Moore was treated with chemotherapy for about a week, which killed his existing immune system. When the stem cells were returned to Moore’s body, they rebuilt themselves into a functioning immune system.

At least, that’s the plan.

“It kind of gives the immune system a cease fire,” said Carol Burns, a clinical research nurse with the school’s division of immunotherapy and autoimmune diseases in Chicago, which treated Moore. “It tamps down the immune system so that the things that bothered it originally are no longer relevant and you have a health-immune system.”

The excess collagen stops, and with a healthy new immune system, Burns said, the body is able to return to normal.

Because the procedure kills the immune system before rebuilding it, it leaves patients open to infection. Moore said a few doctors and friends told him to reconsider at first because of the risks involved.

On Social Security, Moore had help from friends and family to raise enough money to go to Chicago for the transplant last year.

Morre has to visit Chicago for two checkups this year, and has set up a website where friends and family can pitch in on airfare and hotel accomodations for his trips.

“I told them, ‘This is not for me,’ ” Moore said. “If in the future there is someone who can’t handle this condition, then I contributed to the study that might save their life. And knowing that I had chance to get better and a few days of chemo was the only thing I had to do? I could handle that.”

So far, 96 patients have gone through the procedure at Northwestern. All have seen major improvements, Burns said.

“We have transplanted people who could only get around in a wheelchair and were in really rough shape,” Burns said. “One woman is a lawyer now. She’s doing well and walking.”

‘I know I am getting better’

by: TIMES PHOTO: JONATHAN HOUSE - Physical therapist Katie Carr helps Erion Moore claps a walker during physical therarpy at Schools Immediate Care Clinic in Tigard.Moore first noticed ulcers on his hands in 2006 but thought nothing of it. In time, though, he saw other signs. Playing basketball with friends he wasn’t able to dunk — something he had no problem with before.

“I knew something was wrong,” he said. “I couldn’t run or jump.”

A shot-blocker on the court, he was suddenly unable to stop people from getting past him.

“This guy, he was 6-foot-3, he dunked on me,” he said. “That’s never happened before.”

He took yoga and palates to increase his flexibility, but it kept getting worse. Moore worked at a probation camp for juvenile offenders, but wasn’t able to keep his job as his health deteriorated.

After his diagnosis he couldn’t afford the expensive medications and ended up in the hospital with ulcers in his stomach.

He developed acid reflux disease and vitiligo, a condition where his arms developed discolored pink splotches.

By 2010 he walked with a cane and could barely lift himself off a chair.

“I was completely hunched over looking at my feet when I walked,” Moore said. “Everything’s so contracted. If I looked up, the skin from my chin would pull down to my stomach. That’s how tight it was. I couldn’t lay flat, I couldn’t turn over.”

A year later he relied on a motorized scooter to get around.

By 2012, he had to have a caregiver come to help him get up, shower, and make him meals.

by: TIMES PHOTO: JONATHAN HOUSE - Erion Moore chats with his physical therapist Katie Carr during an office visit. 'I want to do seven days a week [of therapy] if I can. At least six,' says Moore. “There was one day I got stuck in bed,” he said. “Last year was the most aggressive year for me. I couldn’t reach inside the fridge, or reach the thermostat.”

He went from 190 pounds when he was first diagnosed to 130 when he arrived in Chicago.

Moore said he expects to see at least 70 percent of his mobility come back and has already seen improvements

“Three days after transplant my skin started to loosen,” Moore said. “It’s still loosening, and it will probably go back to normal over time.”

After the transplant, Moore says his next step is to regain the strength of his atrophied limbs.

“I can stand up, but I don’t have the strength to hold it,” he said. “I couldn’t open my mouth before.”

He does two days of physical therapy a week, and exercises at home twice a day. He has hand braces to see if he can uncurl his fingers.

Moore knows he likely will never play basketball again, but he wants to at least be able to get back to work.

“I want to work with juvenile or adult offenders again, but I want to be in more physical shape,” he said. “There may be a few careers I could see myself in, but that’s something I know I want.”

Moore has a special incentive to get better. His best friend is getting married this summer, and Moore said he wants to walk down the aisle as a groomsman.

“I’m not in nobody’s wedding in a scooter,” he said. “If I need a cane I’ll be there. I won’t ride down the aisle in my scooter with my date on the front of the handle bars like in elementary school.”

Moore lives alone in his Tigard apartment but said he has never let the limitations of his disease get him down.

“I have no time to get depressed,” Moore said. “When I first found out about the transplant I said, ‘I’ll get better after that.’ Now all I can think about is getting better. It keeps me focused. I can’t get depressed; I know I am getting better.”