As they sat down in their Bensalem apartment for an interview on Tuesday — Rare Disease Day — Armando Head-McCurdy and Sarah Morrill talked about the trials and challenges of dealing with their own rare disease.
But just as much, they talked about how handling it together makes it immeasurably better.
Head-McCurdy and Morrill, both 28, have epidermolysis bullosa, a painful genetic condition that renders various levels of skin very fragile and very prone to tears, open wounds, blisters and other complications. It affects one out of every 20,000 births in the U.S. and one out of 50,000 births globally, according to medical authorities.
Since there is no cure yet, the couple, like others with their disease, goes through a daily — or every-other-day — lengthy and expensive routine of thoroughly cleaning and treating any wounds, draining blisters and applying fresh bandages to frequently used parts of the body like the hands and feet.
“It can lead to other complications,” said Morrill, who has a less severe form of the disease than her partner. “I had to have dental implants put in when I was 24 because the enamel on my teeth was so bad. I also get frequent corneal abrasions.”
There are good days and bad days, Head-McCurdy explained.
“Growing up, I definitely went through periods of depression,” he said. “Kids aren’t exactly the friendliest to someone with my condition, or understand what the condition is about. Sometimes, I still wake up and think “Why me? Why did this have to happen to me?”
Head-McCurdy grew up in Tampa, the son of migrant workers who eventually gave him up for adoption because they didn’t have the means to properly care for his disease.
Moving to Michigan with his adoptive parents, Head-McCurdy earned a bachelor’s degree in Psychology from Eastern Michigan University, but shifted his career course and is now an information technology specialist in the medical reviews field. Morrill, who grew up in Somerset, N.J., has a bachelor’s degree and a master’s degree in Occupational Therapy from the University of Scranton and now practices OT for Penn Medicine/Princeton Health at various schools.
The two met in 2018 while working as counselors at Camp Discovery in Crosslake, Minnesota, a camp for people with skin diseases. Head-McCurdy had attended the camp as a child and met his adoptive parents there.
It didn’t take long for a serious relationship to develop, and the pair found their way to Bensalem, where they are looking forward to a long life together including marriage and, hopefully, children.
“Dating someone with EB is a rollercoaster,” Morrill said in a recent interview on the MiaThrives podcast. “I normally don’t like rollercoasters, but this is the best ride ever.”
Her partner agreed.
“Meeting someone else with the same condition and being able to be in a relationship with them, that’s very helpful.” Head-McCurdy said in the Tuesday interview with The Herald. “You have somebody else who understands what you’re going through. For me, it’s a constant learning experience, a constant reminder of, ‘Hey, I have a pretty damn good life despite this condition.’”
Morrill, whose high energy, humor and bright outlook on life come through in every word, said that being able to find the funny side of things that would otherwise be very stressful is an integral part of the relationship.
“When we came back from a vacation in Mexico last year and Armando’s feet were so ripped up, I remember pushing him through the Philadelphia airport with all of our luggage and laughing,” she said. “I wouldn’t have had it any other way.
“We have EB, and it’s hard and can be very, very tough, but we’ve learned to find the humor in a lot of things that have happened in our relationship. If we didn’t laugh about it, I think we’d both be pretty miserable.”
Help has also come from other sources, Morrill added.
“We love to travel and have a lot of friends,” she said. “Those are some of the things that give us a lot of purpose and meaning in our lives.”
Though they both love kids, the question of having children is difficult for Head-McCurdy and Morrill because EB is often passed from parent to child, though none of their parents had the disease.
“There are a lot of pros and cons to consider,” Head-McCurdy noted.
Created in 2008 by EURORDIS (Rare Diseases Europe) — a nonprofit alliance of more than 1,000 rare disease patient organizations from 74 countries — Rare Disease Day is meant to raise awareness among policy makers and the public about rare diseases and their impact on patients’ lives. A rare disease is considered one that affects no more than one in 2,000 people, according to rarediseaseday.org.
Head-McCurdy and Morrill said they welcome opportunities to share their story to help others understand what it’s like to find hope and love living with a rare disease.
“A lot of people don’t know about it,” Morrill said. “The more word we get out about it, the better.”
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