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Home › Articles › Illnesses, Diseases & Disorders › Hemochromatosis

Hemochromatosis

Raising Awareness of This Genetic Disorder

By Teri Brown

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For Jennifer Sheahan from Murrieta, Calif., getting a positive diagnosis for her young daughter was an exercise in patience. Both Sheahan's mother and her husband's uncle were diagnosed with hemochromatosis and her mother senses immediately went into overdrive.

"I began to research it on the Internet because it seemed strange to me that I had never heard of hemochromatosis before, and then within two months we had relatives on both sides with it," says Shehan. "I realized that it was a genetic disorder and then I knew that I wanted my children's iron levels tested."

What Is It?
Hereditary hemochromatosis (HH) is a little known condition also known as iron overload disease. People with HH have an abnormal iron metabolism that permits absorption of too much iron from an ordinary diet. Most people who develop HH do not know they are storing dangerously high levels of iron until the symptoms become almost debilitating.

Sheahans' daughter underwent several tests that showed a slightly elevated iron level. Sheahan wanted more information and tests for her daughters, but the lack of knowledge she found within the medical community appalled her. "The previous doctors kept telling me to be happy, that most kids coming through their door were anemic and that having too much iron is a good thing, not bad," says Sheahan. "I have to give pause at that statement now. If these pediatricians only realized how detrimental excess iron can be."

Sheahan's mother instincts were right and her daughter, Cassidy, was diagnosed with hereditary hemochromatosis at age 4. She called the American Hemochromatosis Society because she had heard there was a cheek swab test that could have been performed to detect the genetic mutations for HH. After taking the swab tests it was confirmed that she and her husband were both carriers. Her daughter had the two mutated genes necessary to develop the disease. Her other two children only had one gene.

"Armed with the genetic test results saying that she does have HH since she has both the genetic mutations, we went back to Children's Hospital in San Diego," says Sheahan. "Her new results showed that her iron levels were rapidly increasing. She still was not showing any of the adult symptoms, but she was only 4 years old and no one knew what child symptoms would be."

Sheahan's daughter is now undergoing treatments to keep the disease under control. "I feel sad that this is something she will have to face for the rest of her life, but blessed that it is very treatable and only a minor inconvenience compared to childhood cancers, leukemias and other major calamities," says Sheahan. "It concerns me that many doctors, pediatricians, etc., do not know much about this extremely common disorder."

Breaking Down Hemochromatosis

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