Survivor wants you to know about widely misdiagnosed disease

PORTLAND, Ore. - Hemochromatosis is the most common genetic disease in America but it's also widely misdiagnosed. Jeff Williams of Portland is fighting to change that after he nearly died from the disease.

It's estimated millions of Americans have at least one of the genes needed to contract the disease, hundreds of thousands of those live in the Northwest. It's potentially deadly if not caught early.

Williams says he is lucky to be alive to tell his story.

"My liver is permanently damaged. My pancreas is permanently damaged," he says.

When he was first admitted to the hospital in 2008 doctors said he had cirrhosis of the liver from being an alcoholic.

"And when I went in and woke from my coma after six days they said to me, 'If you had showed up 12 hours later we would not have been able to resuscitate you.'"

He says the doctors thought he was going through alcohol withdrawal.

But the doctors were wrong. Williams knew it because he wasn't a heavy drinker. He was also diagnosed with diabetes.

As soon as he got out of the hospital, Williams started doing his own research with a friend who is a doctor. He asked why he had cirrhosis and diabetes at the same time. He first started looking at causes of cirrhosis.

"One of them was hemochromatosis. So I flipped over to hemochromatosis and I was reading the heading, and it said what it is and (listed the) symptoms: diabetes, cirrhosis. And I go, 'Oh my God, that's what I have.'"

Williams got blood tests. Those tests showed high levels of ferritin which is a protein in cells that indicate how much iron is in a person's system. Williams' levels were 15 times greater than normal, meaning toxic levels of iron were attacking his vital organs.

"It damages your hormones. It damages your liver. It damages your pancreas," he says. "It will start to damage your heart tissue (and) your lung tissue. It can cause confusion in the brain."

He began treatments, giving 72 pints of blood in 72 weeks.

"When your body loses that iron it says, oh you need more iron. So it has to go find it and it gets it from all of your body, your tissue," he says. "So you're pulling the iron out of all the cells in your body until (at) such a point you have the same amount as a normal person."

Williams got his iron levels to a normal range which he maintains by giving blood three to four times a year. He already suffered severe and permanent damage to his liver and his pancreas, and he has a 33 percent chance of getting liver cancer.

But he knows he would be dead today if he didn't self-diagnose his own hemochromatosis.

"My liver would have gotten worse and worse. I would have gotten liver cancer. My liver would have failed, and then I would have started getting heart failure and lung problems and brain problems," he says.

His story gained national attention in The Washington Post. It's something he's proud of because he knows information about the disease saves lives.

"People find out post-mortem that they had hemochromatosis," he says. "The bodies are littered on the side of the road of people who have precisely that problem."

Williams' twin sister was diagnosed with hemochromatosis too and caught it early enough to avoid any organ damage.

Early symptoms include fatigue, joint pains, weakness and darkening of the skin.

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