Real Stories from People Living with Hemophilia

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Living with the complications of hemophilia can be challenging. However, with treatment, people with hemophilia can manage their bleeding symptoms. Read these personal stories from people living with hemophilia.

Maya’s Story

Maya faced many obstacles during her journey to control her bleeding symptoms and get a diagnosis. Learn more about how she persevered to get where she is today.

Jennifer’s Story

When Jennifer was diagnosed with hemophilia and VWD, there weren’t many resources for girls. Now she’s sharing her story to raise awareness.

Eric’s Story

Eric standing on the street with palm trees in the background

With no family history of hemophilia, Eric’s diagnosis was completely unexpected. Now, his diagnosis gives him purpose and a community.

Carrie’s Story

Carrie is no stranger to hemophilia – she, her father, and her son have hemophilia B. Read her story to learn the advice she gives to other parents of children with bleeding disorders.

Matt's Story

“Hemophilia? That’s where you can’t stop bleeding, right?” That was the extent of Matt’s and his wife, Anna’s, knowledge of hemophilia when they decided to foster Chris, a 7-month-old boy with severe hemophilia.

Mikey's Story

Mikey is an active teenager who does not let hemophilia stop him from playing competitive sports. He shares his story to inspire others with bleeding disorders to live life to their fullest potential.

Shellye’s Story

Hemophilia primarily affects men, but women can have hemophilia too. Shellye experienced the symptoms of a bleeding disorder but was not tested and diagnosed until later in life. Read about her journey from symptoms to diagnosis.

Alden’s Story

“I look at hemophilia and see that it’s a part of me. I’m not going to work my way around it. I’m going to work with it. I’m not going to let it define me.” Read about Alden’s experience living with severe hemophilia and the added complication of an inhibitor.

Jane's Story

Having a child with hemophilia can be challenging for parents, especially if their child has an inhibitor. Jane describes the difficult times her son and family have gone through as well as the positive life experiences her son has had.

Sonji's Story

“Every time a bleed happens, I hold my breath to see if Thomas’s body is going to respond to treatment.” Sonji shares the challenges and concerns she’s experienced while raising her son with hemophilia.

Cazandra’s Story

Caeleb developed an inhibitor before he was 1 year old and spent years in and out of the hospital. Learn more about the complications he faced and why Caeleb is now happier than ever.

Debbie’s Story

Debbie’s son Matt has hemophilia and experienced a life-threatening blood clot. Read her story to learn how Matt had to fight for his life during this challenging time.

Ashley’s Story

How do you treat a toddler with hemophilia? Read Ashley’s story to learn the challenges and moments of resilience she’s experienced while raising her son Jackson with severe hemophilia.

Renita’s Story

Renita’s son Edwin was born with severe hemophilia. Read her story to find out why she is a champion for the bleeding disorders community.