re: Generation

April 15, 2022

Living and Loving with Hemophilia A

“I think back to those first two years and how strenuous it was dealing with hemophilia and inhibitors in their worst form. I’m thankful that my family bonded together.” —Christal, Tristan’s mother

Tristan is a ball of energy complete with a basketball in hand. The nine-year-old runs through the house dribbling, ducking, and weaving—imagining himself on the court. During the long Chicago winters, practices and games give him a place where he can challenge himself and find a much-needed physical release.

Before Tristan can hit the court, however, he must receive medicine administered by his mother, Christal, who doubles as an at-home nurse. Donning a mask, she takes great care to keep her supplies sterile as she prepares a syringe. The injections once induced panic, but today Tristan remains calm as the needle pierces his skin to deliver an important protein that is missing from his blood.

The injection is central to managing Tristan’s hemophilia A, a genetic bleeding disorder that requires near-constant attention. Lacking factor VIII (fVIII), Tristan’s blood doesn’t clot properly. “If I get a cut, it will bleed more than normal,” he explains. Unfortunately, Tristan’s factor is very deficient, making his hemophilia severe. But, through education and determination, he and his parents have learned how to manage the condition and its complications, growing together through his travails.

“When I make decisions, I have to think about things differently. Am I going to get hurt or not?” —Tristan

Tristan came into the world a seemingly healthy baby. However, after his circumcision he developed a hematoma, which eventually burst. Christal removed Tristan’s diaper to find it soaked through with blood. Petrified, she and her husband, Ron, raced Tristan to the emergency room where they were told that that their son had hemophilia.

“They told us, ‘There is no cure, he has the most severe form, and it is a condition he is going to have the rest of his life.’” —Christal

The overwhelmed parents feared the worst for their baby boy, but with the help of Rush University’s hemophilia treatment center (HTC), they learned that, with proper medication, Tristan could live a fairly normal life.

Still, managing Tristan’s condition proved challenging. As he crawled, walked, and eventually ran, he sported more bumps and hematomas. When it came time to treat a bleed, Tristan’s will and cells were steadfastly resistant. “It was so hard to get to his veins,” says Christal, recalling the struggle to place a needle into the traumatized toddler.

To make matters worse, after his first few treatments with factor, Tristan developed an inhibitor—meaning his immune system began attacking the “foreign” factor in his blood, destroying it before it could clot and stop the bleeding. Now Tristan needed more frequent injections, up to eight a day, which exacerbated his needle trauma. Doctors installed a Port-A-Cath® in his chest to make injections easier, but it was prone to frequent infections—one of which caused Tristan to go into shock and be hospitalized at fourteen months old. Tristan listens to his mother retell some of these difficult moments with surprise. “I never knew you were so scared,” he says compassionately.

In addition to the acute stress of his hospitalizations, his family was also dealing with the financial burden of hemophilia, which costs thousands of dollars per injection. But the loving parents persisted. Christal left her job to take care of Tristan while Ron worked even harder to make sure the family had what they needed.

Through relentless research, Christal gained access to a new subcutaneous medication through a clinical trial. Tristan started going to the hospital less frequently, overcame his fear of needles, and got back to living his life. The medicine, which Tristan still takes today, brought down everyone’s stress and allowed the family to find a rhythm.

Tristan’s perseverance has bolstered those around him, especially his older sister, Ayamae, who plans to become a hematologist someday. Christal has gone on to create the Power of Perspective  podcast, which, in addition to advocating for the needs of the hemophilia community, is focused on the lessons we learn from everyday experiences and lifelong journeys.

“Two things I learned from Tristan are you don’t know what you’re capable of until your back is against the wall, and children are so resilient. They can go through the worst of the worst and come out the other side.” —Christal

Tristan and his family, and so many others like them, are the reason we bring our whole selves to our work every day, striving toward a future when people with hemophilia A live fully never knowing they would have once lived in fear of bleeds and needed daily injections. We aim to use titratable therapy to meet the individual needs of each child and adult, restoring normal clotting function, preventing the risk of bleeding episodes, and potentially eliminating the need for recurring injections. It’s our mission to reach a day when parents like Christal and Ron can stop worrying about hospital visits and syringes and keep cheering on the next three-point shot.

Read more about hemophilia A and other programs.

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