Hemochromatosis Awareness Club

Hemochromatosis is a disease that affects over 200,000 people in the United States per year, and yet it is practically unknown. Senior Tricia Moriarty, however, is working to bring awareness and action to the Phillips Exeter Academy campus through Exeter’s first Hemochromatosis Awareness Club.

The hereditary disease, an iron buildup disorder, can potentially be fatal if not diagnosed and treated property. Describing it as the “opposite of anemia,” Moriarty emphasized the need for diagnosis. “Once you are diagnosed through a simple blood-drawing test, it is very easy to treat—you just have to get phlebotomies every month or every other month, depending on the amount of iron buildup in your body, to maintain your iron levels,” she explained. “Too often, it is not diagnosed.”

“Too often, it is not diagnosed.”

Moriarty became aware of the disease when she learned that her grandfather had it. “I watched my grandfather suffer and die as his organs began to slowly fail, ultimately because of hemochromatosis,” she said. However, Moriarty also saw the other end of the spectrum: her father and his four siblings received an early diagnosis and have been treated for the disease. “Because they knew to get tested, they saved themselves from suffering like their father and will now live a longer and happier life,” Moriarty said. “I am a carrier, so my kids could have the disease, but I personally do not have to get treated.”

Moriarty founded the club in the fall of 2016, having lost her grandfather the prior summer. “I wanted to make the community aware of the disorder that they could potentially have, as it is so common but not very familiar to people,” she said. “I wanted to eliminate possible suffering among my community and the communities outside of Exeter.”

Senior Molly Canfield, a member of the club, was unaware of the disease until Moriarty drew attention to it on campus. “Until midway through upper year, I had never heard of hemochromatosis,” she explained. “This lack of awareness inspired me to join the club.” Canfield hopes that in working in conjunction with Moriarty, they will be able to save lives. “If hemochromatosis is caught early on, lives can be spared. However, like I was, most people are unaware of the disease and would not think to get tested for it,” Canfield said.

Similarly, senior Grace Gasper benefitted from Moriarty’s call for awareness. “After joining the club, I actually learned that hemochromatosis runs in my family and that my uncle has it,” she said.  “It was a big wake-up call for me to realize that I had never even bothered to learn what hemochromatosis was before, so I hope now I’ll become more aware of not just the things that affect me directly.”

In order to broadcast awareness to the Exeter community and the broader global community, Moriarty runs a Facebook page with the help of her club members. “In our meetings, we discuss what would be helpful to put on the page in order to reach the most amount of people,” Moriarty explained. “In the past year, we have posted links, photos, and genetic maps on the page.” Future plans for the club include making a petition for hemochromatosis testing to be fully covered by health insurance. “As of right now, it is not covered by companies, which contributes to the disease’s anonymity,” she said. “There are a lot of different petition ideas that I would like the club to discuss and decide which one we would like to focus on.”

Moriarty’s efforts have been met with praise and eagerness from all around the world. “We have even had outside people reach out and ask for help setting up a similar program started in their area,” she said. “The Hemochromatosis Australia group has been super helpful and supportive of our club’s endeavors.”

Members of the club also praise Moriarty for her enthusiasm and dedication to the club. “Working with Tricia is really inspirational,” Canfield said. “She has managed to take an issue that she feels passionately about and bring attention to it both in her community at home and at Exeter.” Gasper echoed this sentiment, saying, “I love the members of the club. They’re all super friendly, so meetings feel like a break from work rather than an additional chore.”

Ultimately, Moriarty is glad that fostering hemochromatosis awareness has positively affected the people around her, and she hopes to work towards even more awareness, testing and treatment. “As a club, we are promoting awareness for something that can affect an Exonian for the rest of their life—possibly even save them from suffering in the future,” she said.