WOMEN AND HEMOPHILIA B

Gallery of Remarkable Women

All of these women were nominated as Heroines of Hemophilia B by someone in their life. Each has shown remarkable courage, either in advocating for themselves, or through the care and treatment of others with hemophilia B.

Take a look. Read their stories. These are the faces of truly amazing women.

My mother had what has been described to me as a “quiet grace” – she was born in 1949 and diagnosed with B at a young age. She lived her entire life fighting against the notion that women could have hemophilia, but did so in a way that wasn’t combative, even when she had every right to be. She taught me the importance of advocacy on a personal level, and stood up to myriad medical problems that ultimately claimed her life at age 55. I miss her terribly , and wish she could see how we as a community have progressed to honoring B women. I proudly stand alongside women with bleeding disorders, because I know those who have gone on before. – Ryan

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Ann

Pioneering advocate for women with Hemophilia B

My mother had what has been described to me as a 'quiet grace'...

As a young female affected with Hemophilia B, she became a national collegiate medalist and All-American in Pole Vault, overcoming many obstacles and injuries along the way. She is also the mother of Clyde, a 15 month-old with severe Hemophilia B! – Rick

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Cassandra

My daughter, an athlete who shares Hemophilia B with her son

As a young female affected with Hemophilia B, she became a national collegiate medalist...

Joel is my mother and someone who always made sure to be an amazing influence on my life and health. Growing up a hemophiliac can be confusing and difficult, but Joel was always able to guide me into being comfortable and never allowing it to control my life. From ensuring I participated in sports, to knowing the limitations that Hemophilia can lead to, Joel was able to be a calming and guiding influence throughout it all. She has never allowed Hemophilia to control or affect her life in an adverse manner and has continuously worked tirelessly to improve others’ lives. For these reasons and many more, Joel is my mother and always, my heroine. – Morgan

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Joel

My mother, my influence, my guide

Joel is my mother and someone who always made sure to be an amazing influence on my life...

Stormy has Hemophilia B as well, but she advocates for people in the Hemophilia B community and is always looking out for others. That’s what makes her a heroine. – Jeron

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Stormy

Friend, advocate, woman with Hemophilia B

Stormy has Hemophilia B as well, but she advocates for people in the Hemophilia B community...

My heroine is my mother, she raised two boys with Hemophilia B. Before there were the treatments we have today. She was always there to deal with the bleeds, the Doctors, ER staff, etc. She let us be kids and we did get hurt sometimes. But she always made us feel like we were just the same as any other kids. Thank you Mom for all your hugs, prayers, and tears. I love you. – Matthew

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Kathleen

My mother was there for us

My heroine is my mother, she raised two boys with Hemophilia B...

Joel has taken trauma and heartache and turned it into meaningful, purposeful action. From research to advocacy, she has influenced the community to ensure that others who follow behind her have more options and better resources than she did. She has also been an inspiration to both her father and her son to model for each of them how acceptance and knowledge are power in living with Hemophilia B. She has shown them that no one has to settle and life is full of possibilities. She is beautiful and strong inside and out. I am honored and grateful Joel is my sister. – Kathryn

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Joel

Honoring my sister with Hemophilia B

Joel has taken trauma and heartache and turned it into meaningful, purposeful action...

I am my own heroine because I am not only a patient, but I am a mother to two beautiful children who also have Hemophilia B. I have to advocate not only for my own care as a woman with Hemophilia B, but I have to advocate for my son and daughter’s care as well. I know how to stand up to doctors and people who have the “old way” of thinking and advocate for myself, my children, and other ladies within the Hemophilia B community. Being a woman does not mean that we can’t bleed. We’re bleeders, too! – April

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April

We are bleeders, too

I am my own heroine because I am not only a patient, but I am a mother...

My nurse (name withheld) is always with me, whether it’s an emergency situation or surgery. The medical community in my state doesn’t understand Hemophilia B. My dentist doesn’t understand that I need an infusion before and after my tooth is pulled. My nurse schedules my infusions and extracting my tooth. This is a monumental task! I recently had a total shoulder replacement. We never thought it would happen because of all the scheduling. My nurse made it happen. She insisted that she stay with me after I was returned to my room. The hospital wanted to give me another medication, as it’s standard procedure to protect you from blood clots. I have a good hematologist. Sincerely, Hemophilia B Community Member

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Name Withheld

My nurse makes it happen

My nurse is always with me, whether it's an emergency situation or surgery....

Kirstin is an advocate for Hemophilia B and she has Hemophilia B as well. Always looking out for others like they’re her own family. She has a real genuine connection to the Hemophilia community, always lending a helping hand when someone needs help. That’s what makes her a heroine. We are so thankful for her. We love her dearly. – From your little brother, Ron

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Kirstin

Always lending a helping hand

Kirstin is an advocate for Hemophilia B...

(Name withheld) is part of the Hemophilia of Indiana, Inc. team. She has gone out of her way, even off the clock, to help us with any questions or assistance that we need for my son (who has Hemophilia B) and my family. If she doesn’t have the answer we need, then she helps find someone who does have the answer. She gets to know the people of the community on a personal level and I think that is a very special quality in a person. I don’t know what I would do without her. – Hemophilia B Community Member

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Name Withheld

Support from the HTC team

She has gone out of her way, even off the clock, to help us with any questions...

My mom , she has been my rock. She is a carrier, just like myself. When I had my son, she was there every step of the way. She grew up with 4 brothers, all of who are hemophiliacs. She made it easy to understand and shared her stories with me so I knew what to expect and guided me through the process every time we needed to infuse my son, and when not to. I have been fortunate to help my son understand how to take care of himself and to know his limitations and that it doesn’t need to hold him back in life. That he can still do things and what he loves safely. If not for her, I would have never known how or who to get to where we are now. – Shannon

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Sharon

There for me every step of the way

My mom , she has been my rock. She is a carrier, just like myself...

Joel has had to fight all her life to make her health care providers understand the dangers of Hemophilia to herself and other women. She has to fight her caregivers every time she needs a medical procedure, even if it’s as simple as a dental appointment! – James

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Joel

My wife, a fighter when it comes to Hemophilia B

Joel has had to fight all her life to make her health care providers understand...

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