Livingston woman adjusting to life with iron disorder

MERCED — Donna DaSilva felt exhausted, had trouble breathing and suffered constant joint pain.

Her family wondered what was wrong — she lost 20 pounds in a year and always wanted to sleep on her couch.

This went on for several years.

"I was constantly tired — I hurt everywhere," The 47-year-old Livingston resident recalled. "It was like you have a flu all the time. I knew I was too young to be feeling as tired as I was."

DaSilva had no idea what was wrong with her until last July when she was diagnosed with hemochromatosis. The inherited disease causes too much iron to build up in a person's body.

Excess iron can damage vital organs, such as the heart and liver, and can even be fatal, according to the Iron Disorders Institute. The only way for a person to get rid of the extra iron is through blood loss or in some cases with medication.

Although DaSilva's high iron levels had been in question for years, doctors didn't really know what it was.

But she's one of the estimated 1 million U.S. residents with the condition. DaSilva's mother, who died in 2009, had suffered from similar symptoms, but it was never confirmed whether she had hemochromatosis.

DaSilva said for her to have had inherited the disease, both of her parents must have had it. Since she was diagnosed a year ago, her father was tested for the illness and he has the gene for the disease.

After being diagnosed, DaSilva began to go through therapeutic phlebotomy every week to bring down her iron levels. She also has made changes in her diet.

Alcohol, smoking and vitamin C increase iron levels, while tea, caffeine and milk help block iron absorption, DaSilva said.

Establishing support

Since she's learned to manage her condition, she only has to draw blood every four weeks to check her iron levels. "It's been an adjustment," she said. "But I feel better; it's not all in my head — there is something."

DaSilva wants to continue to educate herself about the disease and hopes to help create awareness for those who have it and for those who might have it, but might not know about it.

She wants to establish a support group in the San Joaquin Valley, since that's the first thing she looked for when she was diagnosed, but didn't find one in the area. "You kind of start reaching out to other people with the same illness," she said. "You want to know if you're the only one. You want to put it all together."

Eventually as the support group grows, DaSilva would like to give presentations to inform area doctors about the disease.