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After growing up with a brother living with hemophilia A and working in roles supporting the bleeding disorder community for years, Jess Klass thought she knew everything there was to know about hemophilia.
Still, when her son Matthias was diagnosed with severe hemophilia A just a few days after his birth, being thrust into the role of caregiver for a newborn with a chronic genetic condition left her feeling overwhelmed.
“In an instant I went from feeling like I knew everything about hemophilia to feeling like I knew nothing,” she recalls. “I was immediately getting calls from the manufacturer of his medicine, ordering the supplies and having conversations I’d only heard about from others in the bleeding disorder community.”
Jess learned her son Matthias had severe hemophilia A when he was just nine days old.
In the seven years since Matthias was diagnosed, Jess has become accustomed to caring for a child with hemophilia, noting both the joys of being a caregiver and the burdens that come with the condition. She and her husband, Andy, have generally been able to help Matthias manage his condition well, empowering him to play an active role in his own care.
However, Matthias still experiences frequent bruising, and some of his injuries, which would be considered minor for most kids, have required emergency treatment. On one occasion over the holidays, Jess recalls flying home early from a family vacation so Matthias could receive care.
“The worry is always there,” she says. “I’m always anxious about him getting hurt – I never feel like I can relax as much as other parents can. I’ve definitely had to find ways to manage the anxiety, because I don’t want my parenting decisions to be based solely on fear.”
Through all the challenges and uncertainties that come with raising a child with hemophilia, Jess remains hopeful that continued research and development will lead to better outcomes for people living with hemophilia such as Matthias.
“One thing I’ve always appreciated about the bleeding disorder community is that people have continued to ask for more – to ask for better treatment options – and that has inspired a lot of the innovation we’ve seen,” she says. “To be working at a company like BioMarin that is committed to innovating for families affected by hemophilia is inspiring and gives me a lot of hope for the future.”
A Steward for the Patient Voice
Jess originally heard about BioMarin in 2017 when Matthias was around a year old. She remembers reading about early clinical data for an investigational treatment for adults with severe hemophilia A that BioMarin was developing. Not long after, she joined the company when a role in patient advocacy became available.
“What the company was doing was so novel and exciting,” she recalls. “I immediately said, ‘That’s where I want to be.'”
In her role at BioMarin, Jess puts her firsthand experience with hemophilia into practice, managing the company’s relationships with more than 60 bleeding disorder advocacy groups across the United States.
“I always say it was meant to be that I’m at BioMarin. I’m a steward for the patient voice – for my family, but more importantly for what I think is the right thing to do for all people with hemophilia,” she says. “I think we’ve really made great strides in terms of including patient feedback in everything we do at BioMarin.”
Growing Up with Hemophilia A
Today, Matthias is a healthy and active 7-year-old who enjoys playing soccer, birdwatching and being a big brother to his 4-year-old sister, Frances. While the worries never completely go away, Jess says making decisions that are not based on fear has been the key to helping Matthias live his life with as few limitations as possible.
“By having that frame of mind, we’ve been able to let our son lead his life, tell us what he needs, and his life has been far less restrictive than if we had let fear dictate our decisions,” says Jess. “I’m just really proud of him.”
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