Man with life-threatening skin disease on mission to save his life

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A California man is about to embark on a mission to save his life and help science in the process.

He has a life-threatening skin disease, and with time and options running out, he just received some encouraging news.

51 year-old Mark Buenconsejo has scleroderma. He finds it difficult to use his hands and fingers, where the skin has tightened and hardened.

“That’s what scleroderma is. It means tightening of the skin,“ Mark said.

But the disease has also affected his lungs.

“It can get your stomach, kidneys, basically all the organs, the lungs are the most affected by it, so it’s just the hardening of tissue in the lungs and it makes it difficult to breathe,“ he said.

The first symptoms began in 2000, when this surfer, golfer and house painter noticed his fingers would get blue when cold, a loss of blood flow.

Then his fingers blistered and became deformed. And in 2006, he was diagnosed with scleroderma. Mark said, “Anyone with condition like mine, they give you a life expectancy of about five years and, I’m at three years, so if you do the math, there’s a couple of years left, so we are running out of time.“

And out of options.

His illness was too far along for him to use his own stem cells. And he could not find a matching donor for a bone marrow, stem cell transplant.

But then a few weeks ago, this husband, father and grandfather received the news—- there was an alternative—- a mother who had given birth donated her umbilical cord and it was a match.

“I’m pretty optimistic about it, but to tell you the truth, they really, you get a nice paragraph of the positives but you get about three pages of the negatives, the risks that you’re taking,“ Mark said.

Mark says many people have helped him through fundraisers that were held—- he hopes to pass it on.

“You have to look at it, if I can help someone, if this is a step to curing scleroderma that’s a good thing, because this is one of those diseases that can attack anybody. It’s not genetic, or anything like that, it just happens,“ he said.

He is a fighter—he already won a battle with his insurance company to pay for the $350 thousand needed for the treatment, one which already has shown promise for another woman.

Money from fundraisers will help pay for his relocation to Seattle.

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