Zach Glavin Thriving While Managing Hemophilia

Zach Glavin, 17, a junior at Perkiomen School, has never let having moderate hemophilia A hold him back. Diagnosed with the hereditary bleeding disorder at birth, he became an athlete, which helped him “be as ‘normal’ as possible.” 

“When I was younger, I didn’t like people to ask me questions about hemophilia because I didn’t want people to think of me as different. But as I got older, I got better at talking about it,” Glavin says. “My parents always encouraged me to participate in activities that were safe for me – that’s how I wound up swimming and playing golf.”

Glavin's family sought care for him at the Hemophilia Treatment Center (HTC) at Lehigh Valley Hospital–Muhlenberg, and his diagnosis required him to undergo intensive treatments. For years, he was on a three-times-a-week prophylaxis (preventive) treatment schedule, which included factor VIII replacement therapy. Infusion of factor VIII, the missing or defective protein in hemophilia A, helps blood to clot normally and had to be given intravenously by a home-care nurse. 

“Those treatments were hard,” he says. 

Glavin’s dad learned how to give the treatments, and around age 11 or 12, Glavin asked his care team if he could learn how to give himself his medication.

“The HTC staff were super supportive and connected me with a nurse who taught me how,” Glavin says. “I’m not sure why, but the treatments seemed a little easier when I could do it myself.”

However, the treatments still were not ideal – and they were invasive.

“I had to plan ahead to make sure I was properly hydrated and needed to be sure I was warm enough so that my veins were easy to find,” he says. “I had plenty of times when I missed or went through a vein. But my HTC team always supported me – either by encouraging me to try again, or by bringing me into the clinic to have professional nurses step in.”

“Recurrent self-infusing at home has been a part of life for so many people with hemophilia. And when the infusions are needed on a regular basis, the person with the bleeding disorder (and often one or more family members) will learn how to do the infusions at home," says J. Nathan Hagstrom, MD, pediatric hematologist with Lehigh Valley Reilly Children's Hospital and Glavin's physician.

The infusion treatments worked, but they left Glavin at risk for injury as an athlete.

“Being injured during my main seasons is a burden because it often takes longer for me to heal than my teammates, and I sometimes have to miss out on key opportunities to better myself both in practice and in competitions,” he says.

With the help of Hagstrom, Glavin began a new treatment called Hemlibra®, a novel engineered protein that partially substitutes for factor VIII, which replaced his previous cumbersome treatments.

“It has drastically changed how we manage hemophilia A,” Hagstrom says.

Rather than receiving an injection every other day or so, Hemlibra is administered once every two to four weeks with a simple subcutaneous injection (much like someone with diabetes would do for an insulin injection).

“With my new medication (Hemlibra) these injuries have been drastically reduced and much easier for me to manage,” Glavin says. “Hemlibra has been a total game changer for me. I went from the stress of having to give myself meds with IV three times a week to giving myself a simple subcutaneous injection twice a month.”

Glavin has been using Hemlibra for almost three years now, and he has not had a major bleed since making the switch.

“Seeing how much easier this new treatment is for me and how effective it’s been makes me really excited about future developments in hemophilia treatments,” says Glavin. “It’s part of what has inspired me to pursue a career in medicine.”

Glavin has persevered through his hemophilia A and was selected to golf in the Pennsylvania Independent Schools Athletic Association (PAISAA) State Golf Championship. And this winter, in addition to being named captain of Perkiomen’s swim team, he qualified for the Eastern Interscholastic Swimming and Diving Championship meet.

“My coaches are all aware that I have hemophilia, but they know I have a pretty good handle on things. I do feel very fortunate that Perkiomen has a fantastic athletic trainer, Mrs. Brault,” Glavin says, who adds that Brault and his mom, Meredith, are on a “texting basis” to make sure his needs are being met. 

Besides his coaches, Glavin also has found support through Hagstrom.

“He’s always taken time to get to know me during my clinic visits. In addition to knowing all about my treatment history and plan, he also seems very interested in my academics and activities,” Glavin says. “He even offered to help me on my medical capstone project for Perkiomen’s Medical Institute program. I think by taking the time to get to know me as a person instead of just a patient, Dr. Hagstrom is able to provide me with the best possible care.”

And Hagstrom has loved walking beside Glavin through his hemophilia journey and treatments.

“Zach has always impressed me with his great attitude and maturity about his bleeding disorder and the challenges it can present,” Hagstrom says. “The restrictions it imposes have not stopped him. Despite having a severe bleeding disorder, he found activities that he could do that he enjoyed and would keep him active. When he developed recurrent joint bleeds, he didn’t let it stop him. He did the regular infusions and never complained. I always enjoy meeting with him at his visits to the HTC.”

Helping others by giving time and support with hemophilia, this year Glavin was asked by his HTC social worker, Carah Tenzer, to serve on Lehigh Valley Health Network (LVHN)'s Family Advisory Committee. 

“Since the HTC has always been there for me, I thought that serving on this committee would be a great way to give back, and hopefully to help some others like me in the process,” Glavin says. “I also have always appreciated the guidance the HTC has given me and wanted to share that with other patients and their families who are in a similar position.”

While there isn’t a cure for hemophilia, Glavin continues to shine light on how others can thrive with it.

“Zach, like so many people I’ve had the privilege of treating, has managed his hemophilia with courage and determination,” says Hagstrom. “He’s lived life and done well despite having such a severe disease.”

And that’s exactly what Glavin plans to do.

“I feel grateful that with the network of support I have: my parents and family, the doctors and nurses at LVHN and within the HTC in particular, Perkiomen School, and my friends,” Glavin says. “I have not had any limits placed on me as a result of my hemophilia. I know that with this continued support, I will find success in my endeavors during the rest of my time in high school, in college, and beyond.”