Medical Student, sister, carrier—one youth leader’s story

Jo Kroll, a native of Tartu, Estonia, barely remembers a time in her life when bleeding disorders were not part of her day-to-day life. At just four years old—shortly after doctors diagnosed her brother with severe hemophilia A—she began a lifelong involvement with the community by attending events organized by the Estonian Haemophilia Society with her parents. These experiences instilled in her a belief her brother was capable of anything if he kept up with his prescribed treatment regimen. On a personal level, she was always aware there was a possibility she could be a carrier, but at such a young age those concerns seemed years away. Even though she knew through firsthand experience that living with a bleeding disorder did not stop patients from living a full life, when she received confirmation that she was a carrier the news left her feeling broken and alone.

Feelings of isolation are common in the carrier community, with women often feeling they have precious few resources available to support them. Jo overcame her fears by educating herself on her condition through WFH Programs and Education department material (available on the WFH eLearning site here), through her national member organization (NMO) resources and by speaking with healthcare professionals. After learning all she could on carriers and bleeding disorders, she started to feel more optimistic. Nevertheless, she was nervous before having the “conversation” with her boyfriend, where she shared the fact she was a carrier and her fears about having biological children. Fortunately, he was very supportive, and now shares Jo’s belief that their children, thanks to advances in care and access to treatment, will be capable of anything—just like Jo’s brother.

Jo is now pursuing her dream of being a medical doctor, but before that she is taking a year off to work as a server in her city’s growing street food scene. Her recent experience at the WFH Youth Leadership workshop served to strengthen her resolve to work with her National Member Organization to ensure the Estonian bleeding disorder community continues to receive the best treatment options available.

The WFH Youth Leadership program invests in the future of our community by training next generation leaders in goal setting, project management, personal development and other crucial skills. You can learn more about this inspiring program here.

The WFH wishes to acknowledge the financial contribution of our current Youth Leadership partner the Hemophilia of Georgia. Their generosity allows young leaders like Jo to attend important Youth Leadership workshops.