URBANA, Ill. — Cross-country skiing and ice skating used to be a breeze for Bob Vaiden.
Active all his life, he easily got in walks of 10 miles or longer.
But that was all before arthritis, a deteriorating liver and other consequences of an often-overlooked genetic condition took a toll on his health.
A 65-year-old Urbana retired geologist, Vaiden said tests done earlier in his life might have spared him the toll on his body from hemochromatosis, the most common form of iron-overload disease in the U.S.
But he wasn’t diagnosed with inherited hemochromatosis until four years ago, when his liver was already failing, he said. That was also two decades after an early warning sign for this disease, joint pain and stiffness, started for him in his early 40s.
Treatment is as simple as blood draws to get rid of the excess iron, Vaiden said.
He underwent a year-and-a-half of blood draws, but not early enough, he said.
“It’s kind of amazing to be dying of something that could have been treated in the 17th century,” he said.
Iron is an essential mineral for good health, and in fact, many foods commonly eaten every day — such as cereals and grains — are fortified with iron to help prevent anemia, the most common cause of which is iron deficiency.
Too much iron, however, can be toxic, building up in vital organs and damaging joints.
A bowl of cornflakes for breakfast and other foods he grew up on are now off-limits for him, Vaiden said.
“All that iron-enriched food your mom gave you, that stuff is deadly to me,” he said.
The most common form of hemochromatosis is inherited, and that’s caused by a defect in an iron-absorption-regulating gene — something Vaiden said he got from both parents.
This genetic predisposition to absorb too much iron can go undetected for a long time. The symptoms for those who develop them start turning up in men around age 40, and for women not until after menopause.
Vaiden said he eventually learned through blood tests that he had about eight times the amount of iron he should have, and he underwent genetic testing to help determine the cause.
Then he warned his brother, who was tested and learned that he, too, had inherited this condition and had an elevated iron level, “but they got it down before it did any damage,” he said.
Hemochromatosis is most common in white people of Northern European decent, and it rarely affects blacks, Asians, Hispanics or those of American Indian decent, according to the National Institute of Diabetes and Digestive and Kidney Diseases.
Symptoms, according to that agency, can include joint and/or abdominal pain, loss of sex drive, feeling tired and an abnormal skin tone of bronze or grey. There may also be an unexplained weight loss.
Men typically develop symptoms earlier than women because women lose blood regularly before menopause through menstrual periods.
By the time he was diagnosed, Vaiden recalled, his skin had turned a yellow-gray color.
Never much of a drinker, he said, he wound up with cirrhosis of the liver, and that damage can’t be undone.
“It’s as if I were a drunk in the gutter for a quarter-century,” he said.
Dr. Nelson Moy, a Carle gastroenterologist, said he tends to see more men with inherited hemochromatosis than women.
Some of the reasons this condition can be overlooked, he said, is that early symptoms such as joint aches don’t necessarily trigger doctors to think hemochromatosis.
People with the inherited condition have been storing iron over time since birth, but joint aches that develop when they’re older are also common, he said.
“What American doesn’t have joint aches,” Moy said.
What’s more, while the genetic defect is relatively common, not everyone who has it will develop health problems as a result. People with one copy of the defective gene, for example, are unlikely to develop symptoms, Moy said.
“One in 230 Caucasians in America carry both these genes that are abnormal, but they don’t all develop symptoms,” Moy said.
Experts advise testing for hemochromatosis for people with a family history and/or symptoms or complications.
Routine screening for this condition in the general population isn’t advised, Moy said. It would add to the nation’s health care costs and the benefit would be relatively low.
The cost burden would be $1,009 spent on screening for every one person identified with this condition, Moy said.
It’s when abnormal liver enzymes turn up in a blood test that a patient may be referred to his specialty, he said. Then further screening is needed to find out why iron levels are abnormally high. That can also be linked with viral hepatitis B, hepatitis C, fatty liver disease and a form of that, nonalcoholic steatohepatitis, he said.
Vaiden doesn’t just have to avoid iron-rich foods. Because of his liver damage, he said he takes water pills to keep fluid from building, and he has to rigorously monitor the sodium he consumes every day, he said.
Cramps in his hands have made it difficult to spend much time doing the artwork he once enjoyed, and sometimes he even has trouble holding a fork, he said. He’s already had to undergo hip-replacement surgery, and also continues to deal with cramping in his legs and feet.
“But on the other hand, I’m still upright, and I can be hard to keep up with,” he said.
This summer, he’s been volunteering at a summer music theater camp for kids at his church, and he and his wife are getting in some travel while he can still get around, he said.
He’s going to eventually need a liver transplant, Vaiden said. Meanwhile, he hopes to stay as active as he can and continue teaching. A former earth science instructor at Parkland College, he now teaches Osher Lifelong Learning Institute courses through the University of Illinois.
Moy said the people most likely to have heard of hemochromatosis and who want to be screened for it are those who know it runs in their families.
Vaiden wants others to know, and he contends periodic blood tests every three to five years or so would help people be aware of their iron levels.
“There’s no reason for them to miss this,” he said.
Source: The (Champaign) News-Gazette, http://bit.ly/2uRWUTK
Information from: The News-Gazette, http://www.news-gazette.com
This is an AP-Illinois Exchange story offered by The (Champaign) News-Gazette.