The World Hemophilia Day story site offers you the opportunity to share your story—either in written or video form—about how a bleeding disorder has impacted you or a loved one. The site is also a great way to discover stories about how bleeding disorders have affected other people and their loved ones.
Over the years, we’ve received many submissions. Here are three written stories, and two videos that we would like to share with you. We’ve taken out excerpts from each—if you would like to read the full text, please click on the link.
Note: the content published on the World Hemophilia Day story site has been uploaded by third parties and is not representative of nor endorsed by the World Federation of Hemophilia.
Maryam Waleed Mahdi
Mother of a son with severe hemophilia A
“Navigating life with a child with hemophilia is an ongoing learning experience, but being part of a supportive community has made all the difference. We’ve learned to celebrate small victories, cherish resilient smiles, and find strength in unity. As we embrace the advancements in medical care and share our collective wisdom, we continue to move forward with courage and optimism.
To all the mothers out there facing the challenges of hemophilia, know that you are not alone. Your strength is commendable, and I am proud to stand beside you.”
To read Maryam Waleed Mahdi’s full story, please click here.
Tatiana Bathfield
Mother of a daughter with severe factor VII deficiency
17 years ago, I gave birth to a baby girl suffering from severe factor VII 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.
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.
To read Tatiana Bathfield’s full story, please click here.
Génesis Cedeño
Person with von Willebrand disease
“I am the third generation with [von Willebrand disease], I always thought it was normal to have anemia and heavy bleeding during my period… [but now I realize] that there are [medical] options for people with my condition. I thank everyone who has helped me on this path… and who taught me that it is possible to have a good quality of life despite the bleeding.”
To read Génesis Cedeño’s full story, please click here.
Eliza VanZweden
Person with Glanzmann thrombasthenia
Even though I was diagnosed from a young age, I have constant severe bleeds which means trips to the emergency room for a platelet transfusion which is my only treatment option. So I’m always explaining my condition to emergency docs who don’t understand, and they easily dismiss me.
I would encourage anybody struggling with feelings of isolation to find your community with other women and girls who have bleeding disorders. And don’t give up until you find a healthcare provider who will take you seriously.
To read Eliza VanZweden’s full story, please click here.
Phyo Khant Kyaw
Person with hemophilia B
“In 1998, I was faced with the harsh reality of my condition when a simple injury to my gum led to a diagnosis that changed my life forever. At that time, diagnosing factor deficiency in Myanmar was a challenge, and I had been on a journey over thousand blood transfusions.
I am immensely grateful to the World Federation of Hemophilia (WFH), for saving my life and the lives of countless others affected by this condition. Through their initiatives and advocacy, individuals like myself have been given a chance at life, hope, and a brighter future.”
To read Phyo Khant Kyaw’s full story, please click here.
Learn more about World Hemophilia Day here. To and access the World Hemophilia Day story site, click here.
The WFH would like to thank our 2025 World Hemophilia Day sponsors for their continued support: Bayer, BioMarin Pharmaceutical Inc., Biotest, CSL Behring, F. Hoffman-La Roche Ltd., GC Pharma, Grifols, Kedrion, LFB S.A, Novo Nordisk, Octapharma, Pfizer, Sanofi, Sobi, and Takeda.
