Hereditary hemochromatosis is a genetic condition that can possibly devastate a person even if he or she is following the best possible lifestyle guidelines.
At its worst, the disease causes the body to absorb too much iron from one’s diet, storing the iron in the tissue and organs. Too much iron can harm these organs, and can cause arthritis, liver disease, diabetes and other ailments over time.
On the other hand, with diagnosis and management, a person can live a full life.
My husband, Paul, and I each have one gene, so we are carriers. I have a primary gene and he has a secondary. Since the age of 50, I have had iron levels that required moderate intervention and yearly blood tests to monitor. Because we were able to identify this genetic condition, I have avoided organ damage, my husband’s blood levels have remained in the safe range and many of our family members have gotten tested. We are very grateful that we discovered this elusive, insidious potential health-wrecker.
The Internet is rife with misinformation regarding hemochromatosis. After hearing the results, wondering what this meant and receiving results from family members to ensure awareness for our family’s future generations, life now goes on as usual. Our main hope and concern is that awareness about hereditary hemochromatosis will spread, saving more families from grave medical conditions and even death.
I was lucky that it didn’t take very much intervention to get my iron levels back to a normal range. Since then, all I have needed to do is make some dietary adjustments and undergo an iron panel test once a year. As Francis Bacon said, knowledge is power.
Because we discovered our carrier status and got our hemochromatosis under control, we were able to continue pursuing our passions. We are husband and wife duo harpists, and have been performing since 1976. We had no musical background, only a burning desire in our souls to create music. After trying several instruments without feeling that spark, our deep yearning led us to harps.
In our late 20s, we called a harp teacher to ask a few questions: Were we too old? Does it matter that we can’t read music?
Clearly, age and lack of rudimentary skills were not deterrents. With daily practice and a fabulous teacher, some notes began to make some magical melodious patterns. Thus began our adventure with our harps.
We have performed for community and college arts programs, arts and crafts festivals, club meetings, schools and churches. We have recorded CDs of our music. We recently moved to New Albany, and have enjoyed performing for nursing homes and retirement communities. We enjoy spending time with our daughter and son, and gardening with old-fashioned annuals. We especially enjoy spending time with our granddaughter.
Had we not discovered our status in regards to hereditary hemochromatosis, getting to where we are in life today may not have been possible. Now, we’re in control of our health, our musical careers and our family’s future.
Brenda and Paul Neal are New Albany residents. Feedback welcome at adeperro@cityscenemediagroup.com.
RELATED READS
