Discover Tatiana’s story as part of the World Hemophilia Day 2025 video series:

17 years ago, I gave birth to a baby girl suffering from severe factor 7 deficiency. From the moment our daughter was diagnosed, our lives changed dramatically. With little to no information about this very rare bleeding disorder, we started navigating a world that was unknown not only to us, but to the majority of healthcare professionals.

My daughter has suffered from joint, muscle as well as intracranial bleeds, not to mention having to deal with her menstrual cycle as well as chronic anemia. Frequent hospital visits, constant medical treatment and an ongoing state of alertness have become our daily routine. Although the last 17 years have been profoundly challenging, hemophilia has in fact brought our family closer. We have learned to communicate openly about our fears and celebrate the victories with great joy.

So for those of you in similar situations, please don’t forget that there’s always light at the end of a dark tunnel. Connecting with a larger bleeding disorders community has been a lifesaver for us. The constant support and their insights remain and have been invaluable. By advocating and raising awareness for equal treatment, I believe we can all make a difference. Let’s give these girls the care they need.