Tamara spent most of her childhood and teenage years feeling like something was wrong with her, even though no one believed her. From the time she was young, she struggled with extremely heavy periods that disrupted every part of her life. She would bleed through pads and tampons in less than an hour, often resorting to putting mattress protectors on her bed because the bleeding was so intense. As a teenager playing soccer and volleyball, even minor injuries left her bruised for weeks and took an unusually long time to heal.
Whenever she tried to speak up about her symptoms, she was dismissed. Doctors insisted her symptoms were “normal,” even though she knew something wasn’t right. “My doctors would tell me that some women just have heavy menstrual cycles,” Tamara said.
Growing up without answers left her embarrassed, isolated, and with low self-esteem. She couldn’t talk with her best friends, as they didn’t understand what she was going through. Tamara carried these feelings into adulthood, continuing to experience heavy bleeding issues, leading to multiple visits to the emergency room, a dilation and curettage (D&C) procedure, and a miscarriage.
“I had to keep track of future periods to gauge if I would be able to participate in a day, weekend, or weeklong outing,” she added. “If it was a scout’s camping trip in the wilderness, a vacation away out of the country, sports, a movie night, or even dinner out, everything took preparedness. My menstrual cycles controlled my daily life.”
It wasn’t until she was in her mid-50s, after a frightening stomach bleed and two emergency blood transfusions, that someone finally asked the right questions. A physician recognized that something deeper was going on and referred her to a hematologist. From there, she was connected with the Hemophilia Treatment Center of Western Pennsylvania (HCWP) and finally received the answers she had waited her whole life to hear. “I was happy to finally have someone listen to me and realize I wasn’t crazy for what I went through as a young woman,” she added.
At age 54, Tamara was diagnosed with Type C Von Willebrand Disease. The news was both a relief and a shock. She knew her grandmother had some bleeding issues but was never formally diagnosed with a bleeding disorder. With her limited knowledge, and as an older adult already undergoing surgeries and medical procedures, she didn’t know what this diagnosis meant for her future.
The team at the HCWP quickly became an essential source of support. They reassured her before surgeries, coordinated with her doctors, helped with insurance challenges, and guided her through medications and treatment plans. For the first time in her life, Tamara felt heard, supported, and safe. With their encouragement, she began to rebuild her confidence and learn how to advocate for her health.
Through the HCWP, Tamara was introduced to the Western Pennsylvania Bleeding Disorders Foundation (WPBDF). She attended her first Foundation event in 2022, an Education Weekend at Seven Springs Mountain Resort. This event is attended by over 200 people, so she was definitely a little nervous and unsure what to expect. From the moment she walked in, she felt welcomed by not only the WPBDF staff, but by the community. It was at this event that Tamara first learned about the Foundation’s Women Group, and she felt incredible seeing there was a space for women to share their experiences with one another.
“Since it was my first time, I sat there and didn’t really participate or say anything. I just listened to everyone around me and thought this was good,” Tamara recalled. “I could be a part of this. I saw women older than me, younger than me, and my age, and it felt like a safe space to share my own stories. The happy stories, or my sad stories—I no longer felt like I was alone.”
As she became more involved, Tamara found herself growing stronger, more empowered, and more eager to help others. She attended advocacy events, spoke up and shared her story at meetings, and developed skills she never imagined having, like the confidence to speak out about her experiences with other adults, something she had always struggled with.
Through the education she received at Foundation events and at the HCWP, Tamara began openly discussing the signs, symptoms, and genetics of bleeding disorders with her family. As a result, her sister and niece have now been officially diagnosed, and Tamara is working to have her son and grandson tested to ensure they are prepared.
Now, Tamara is excited to step into a leadership role as co-chair of WPBDF’s Women’s Group. Her vision is to help women and girls find the support she wished she had when she was young. She wants the group to be a place where women can build confidence, learn from one another, and openly discuss issues that are often hard to share with men, doctors, or even family members.
WPBDF’s Women’s Group is open to all women who are diagnosed with a bleeding disorder as well as an adult family member or other person of support to someone with a bleeding disorder. This group is dedicated to learning together, building peer relationships, and engaging in educational opportunities to learn about a variety of topics related to living with a bleeding disorder. These topics include self-advocacy and general overall wellness and mental health.
“I think the women’s group is so important because it’s a place where women can share experiences, learn from each other, and support one another,” Tamara said. “Whether it’s managing health issues, giving medication to a child, or navigating challenges like school or bullying. Being part of this group allows us to learn together and help each other move forward, at every stage of life, from adolescence through adulthood.”
For Tamara, being part of this community has been life changing. She hopes to use her experience, compassion, and newfound confidence to advocate for women, educate families, and guide others through the challenges she spent decades navigating alone.
Most of all, she wants other women to know what she learned later in life: you are not alone, your voice matters, and there is a community ready to support you. “I wish I had the knowledge and support I have today from the HCWP and WPBDF when I was younger. I want and need for today’s young women to know there are many resources available for you.”
Every day, women like Tamara find hope, community, and connection through the Western Pennsylvania Bleeding Disorders Foundation. Our WGPPM Initiative provides vital support while raising awareness about bleeding disorders and helping more people get answers sooner.
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