By Shelly Fisher and Donna Kim

“Have you ever heard of hemophilia?” Those were the words that forever changed Theresa Mitchell’s life as a young mother. Holding her toddler, whose swollen arm and large knot on the head revealed a bruising issue far beyond ordinary childhood falls, she demanded answers. It took weeks of uncertainty and dismissive comments—like attributing bruises to being a redhead—before a pediatric doctor suspected hemophilia and suggested further testing. Those next days felt endless for Theresa.

At Chicago’s Children’s Memorial Hospital, her son was diagnosed with hemophilia B, a condition unfamiliar to Theresa, with no known family history. Genetic testing at the Mayo Clinic eventually confirmed her as a carrier, tracing it through her father’s side. Navigating this new reality was daunting, especially with her son’s diagnosis occurring amid the height of the AIDS epidemic. Factor IX treatments were limited, and Theresa had to learn to mix and administer the medication. Humor became their coping mechanism—stuffed animals received “fake Factor” to make infusions less scary. By age nine, her son could self-infuse at camp.

Recently, Theresa’s diagnosis shifted from being a symptomatic carrier to having mild hemophilia herself. Then, on Halloween, she received another life-altering diagnosis: breast cancer. Facing multiple health challenges required meticulous planning with her hematologist and cancer care team. Coordinating factor supplies and creating a detailed treatment plan made an immense difference in managing both conditions. However, the process was anything but smooth. A biopsy at a non-hemophilia center resulted in complications, reinforcing the need for careful medical planning and immediate access to factor.

The complexities of hemophilia delayed her cancer treatment by months. Typical timelines for diagnosis, biopsy, and surgery stretched, highlighting the need for quick, specialized care. Yet, Theresa found strength in her hemophilia journey. Years of navigating health crises equipped her to face cancer. As she said during a hemophilia clinic visit, “It was like another day in the park.”

Theresa emphasizes preparedness: individuals with hemophilia need a written treatment protocol from their hematologist and a home supply of factor. Misconceptions about hemophilia as a “male disease” only heighten the urgency for awareness and access to care for women. Her experiences underscore the need for advocacy and education.

Theresa’s advice for parents of newly diagnosed children is rooted in decades of experience: take a break, learn all you can, connect with others, and use humor to navigate challenges. Parenting a child with hemophilia transitions to supporting an adult managing their treatment, insurance, and care independently. “Let go and let them grow,” she advises, while keeping communication open.

Theresa turned her knowledge into community support, creating a Parent to Parent group through the Hemophilia Foundation of Illinois. Hosting events for families provided a supportive space to connect. Joining The Coalition for Hemophilia B, she now shares her wisdom with a new generation of parents. Her humor remains a constant. “If something happens on your watch, just put a bag of peas on it,” she tells grandparents.

Despite her challenges, Theresa’s resilience shines through. Her proactive approach extends to staying active through swimming and exercise classes at the YMCA, and finding peace in gardening. Retirement from a sales career hasn’t slowed her down; she continues to advocate, inspire, and prepare for the future of hemophilia care, including advancements in gene therapy. As Theresa reflects, “I have advocated for my son all my life and am now advocating for myself.”

Her journey reminds us all of the power of resilience, the importance of preparation, and the healing nature of humor and community. Through every challenge, Theresa embodies strength, transforming adversity into advocacy and hope.