By Doug Lanter
February 16, 2021, is a day I’ll never forget. My twin boys had just been born, and only two hours later, I learned that the unexplained blood disorder in my family had a name: RUNX1-FPD.
It was a relief to finally have an answer, but I still didn’t know what the diagnosis would mean for me or my children.
For as long as I can remember, I knew there was something different about my family’s blood. My grandfather, my mother, and I all had the same unexplained condition. Then my grandfather died from leukemia.
Years later, my mother developed the same cancer and died after her second bone marrow transplant. I became convinced that the same thing would happen to me. For years, fear made me avoid doctors instead of seeking answers.
By the time I was diagnosed, I was a father of three boys who had shown the same blood findings I had. Being a parent felt even scarier than being a patient. I worried about leaving my children and about what their own futures might hold.
Finding the RUNX1-FPD community changed my life. I finally found people who understood and doctors and researchers who could help my family. Visiting the NIH and participating in research was overwhelming, but it also helped me recognize how much progress had been made since my mother died.
In January 2022, a bone marrow biopsy showed that I was rapidly developing leukemia. I began chemotherapy and received a bone marrow transplant that July. I’ve experienced complications, but I’m alive, and I’m still here to be a father to my three boys.
Acceptance, for me, has not meant that the fear disappears or that I suddenly have all the answers. It has meant learning that I don’t have to face the uncertainty alone.
If you’re newly diagnosed, take a few deep breaths. You probably won’t get every answer right away. Give yourself permission to seek support from therapists, family, friends, or others in the RUNX1-FPD community.
No matter how scared or alone you may feel, there are people ready to help.
About the Author
Doug and his three boys all have RUNX1-FPD and are part of the RRP community. As both a patient and a parent, he shares his story to help others feel less alone as they navigate diagnosis, treatment, and uncertainty.
Ready to share your own story? We’d love to hear from you about becoming a guest author.