In general, hereditary hemochromatosis (HH), has been considered an “adult onset” disease. In fact, it used to be called the “Half Century” disese because it was thought to only affect patients after they were 50 years old, and usually male. We now know that these were incorrect premises, and that hereditary hemochromatosis can affect men and women of any age. Because of these outdated premises, children in the past have never been tested for hemochromatosis, and even the elderly have been left out of the screening process. Imagine screening all of the patients in nursing homes and retirement communities for hereditary hemochromatosis. Many new cases of iron overload would be found, and the gene mutation(s) for hemochromatosis would also be identified for that family group and subsequent generations could be genetically screened and identified. As a result, these newly identified family members should be monitored and protected from the ravages of hemochromatosis.
For these reasons, the American Hemochromatosis Society encourages families to screen their elderly family members to make sure that the conditions of “old age” are not really undiagnosed hereditary hemochromatosis (i.e. diabetes, mental confusion, impotence, arthritis, heart irregularities, liver disease). We also encourage doctors to consider hemochromatosis when evaluating their geriatric patients. We hear from patients in their 70’s and 80’s who are diagnosed and in treatment. These patients are not “too old” to be treated and gain some extra quality life as a result.
My mother, Josephine Bogie Thomas, was diagnosed at the age of 62. She went to about seven doctors before getting a correct diagnosis for hemochromatosis. And, even then, the doctors did not tell us about this disease, only noted it in her medical records. Had I not read my mother’s medical records, I would not have known she could even possibly have something called “hemochromatosis”. Of course, had she been tested much earlier, she would not have had the advanced stage of hemochromatosis that she did at diagnosis. Not all seniors or geriatric patients, however, will have advanced cases of hemochromatosis. Only proper testing will tell for sure. Even with the advanced stage of hemochromatosis, with proper and aggressive treatment, she lived another 16 years and died from complications of hemochromatosis on May 13, 1999 at the age of 78. Her dying wish was that everyone be tested for hemochromatosis so that they would not have to suffer the way that she did due to an easily treatable disease.
Sandra Thomas, President, American Hemochromatosis Society