MOORHEAD -- Hereditary hemochromatosis is one of the most common genetic disorders in the United States, yet many people remain unaware they have it. That was the case for Alex Swanson of Moorhead, who only learned about his condition after taking a genetic test in 2024.
"It's been, I would say, life-altering," Swanson said.
Swanson is one of roughly 1 million Americans with hereditary hemochromatosis, a disorder that causes excess iron buildup in the body. His test results revealed two defective copies of a gene responsible for the condition, something he had no idea he carried.
"There's a few things that came up. You have a slight increased risk for this or that. But there was one that stood out among all of the predispositions I had," Swanson said.
That result signaled a potential health crisis. If left untreated, hereditary hemochromatosis can lead to severe liver disease, diabetes and even cancer.
"Once I was tested and diagnosed and found out that fatigue and tiredness and foggy mindedness, along with the joint pain that I had been experiencing were common symptoms. I thought, aha," Swanson said.
Following his diagnosis, Swanson began treatment. For three months, he underwent weekly blood draws to reduce the iron buildup in his system. Now, he only needs to have his iron levels tested once a month.
The results have been life-changing.
"As a musician, I find myself being able to perform more competently. My fingers don't hurt anymore," Swanson said.
As the organist at the Fargo Theatre, Swanson's arthritis in his hands and lower back had caused increasing difficulty in his performances. His symptoms were part of what pushed him to seek answers.
Now, he is on a mission to spread awareness, hoping to help others who might unknowingly be suffering from the same condition.
"I want to do everything I can to spread awareness about getting tested and treated for this and preventing it," Swanson said.
Since sharing his diagnosis with his family, two of his cousins have also been diagnosed with hereditary hemochromatosis.
The disorder is most commonly found in people of Northern European descent. Diagnosis requires only a simple blood draw and lab test.