A few words
About Us
History
Free Bleeders is a non-profit organization based in Atlanta, GA which was founded by Tracye Hamler in 2019 as a resource for advocacy, education, and networking for women:
1) who have been diagnosed with bleeding disorders, and/or
2) whose lives are impacted by caring for someone with a bleeding disorder.
Disclaimer: “Free Bleeders”, a non-profit organization for women living with bleeding disorders, which is the subject of this website, should not be confused with a women’s movement by the same name (“Free Bleeding or Free Bleeders”), which started in the 1970s whose premise was to menstruate without using tampons, pads, or other menstrual products to absorb or collect your flow. It began as a reaction to toxic shock syndrome and has expanded to other social reasons for motivation through the years.
Why Focus on Women in Particular?
Historically Hemophilia was thought of as a “male disease”. Bleeding symptoms in women were often attributed to a hormonal deficiency and were treated with hormone therapy, either mistakenly or unnecessarily. Screenings for inherited bleeding disorders were not considered for females, and continue to be underperformed, putting women at high risk for serious illness or even mortality. Alarmingly, the average time from the onset of bleeding symptoms to diagnosis for females is 16 years. The need and urgency for early diagnosis of Hemophilia and inherited bleeding disorders, comprehensive testing for carrier status and appropriate care for women cannot be over-emphasized; thus the reason for our focus on women.
Our purpose is to raise awareness, educate, advocate, and support this special community of women and serve as a catalyst with the medical and legislative communities, while simultaneously empowering women with bleeding disorders to advocate for ourselves.
About Our Founder, Tracye Hamler
Tracye Hamler…..is a recently retired from the Army National Guard with 17 years of experience in Supply Chain Management, and an AS Degree in Healthcare Administration it was no surprise Organization and Event Planning lead Tracye to her passion and purpose. She’s currently been in direct sales for past 5 years for Lifestyle Brand known as Bedroom Kandi. It wasn’t long before she was recognized as one of the top leaders for personal sales and team sales volume. When we asked her how she does it she replied:
“Its simple, I have developed a passion for entrepreneurship and female empowerment.”
Over the past 5 years Tracye has organized events that have created lifelong sisterhood bonds and relationships. This is what has inspired her to take her event planning to another level and turn them into Annual Women’s Retreats. “I am excited to inspire the everyday working woman to fearlessly live with passion and purpose. However, I don’t want to stop there. My goal is to create monthly or quarterly refreshers that will reinforce all the tools they gain from my retreats.”
Combining her passions for female empowerment and entrepreneurship, Tracye Hamler applies her background in event organizing to power FWR.
Hamler practices what she preaches by continuing to learn new skills and education, fearlessly taking on new challenges, taking time to self-care while being her own boss.
“I am excited to inspire the everyday working woman to fearlessly live with passion and purpose.”
Tracye’s Story: Her Path to Hemophilia Diagnosis
Tracye Hamler, the founder of our organization, has a deeply personal journey that led her to advocate for and support women diagnosed with bleeding disorders. Her experience has given her valuable knowledge, wisdom, and passion, which prompted her to establish a nonprofit organization dedicated to this cause.
Discovering Her Son’s Hemophilia
In 2005, while pregnant with her first child, Tracye learned that her father had Hemophilia. Encouraged by her father, both Tracye and her unborn child underwent testing for bleeding disorders. Shortly after birth, her son developed a large hematoma on his head due to a traumatic delivery, leading to his immediate transfer to the Neonatal Intensive Care Unit (NICU) where he was diagnosed with hemophilia. This marked the beginning of Tracye’s own journey with bleeding disorders.
Initial Misdiagnosis and Traumatic Experience
Initially, Tracye was informed that as a woman, she couldn’t have the disorder itself, but would only be a carrier. Consequently, she and her medical team assumed she didn’t have a bleeding disorder. However, during labor, Tracye faced complications, including only dilating 9 centimeters, which necessitated an emergency C-section. The experience was highly traumatic due to excessive bleeding. Despite this, Tracye believed her experience was typical and returned to work within the usual 6-8 week period after childbirth, all while still experiencing heavy bleeding and a slow recovery. It was only seven years later that she discovered she had hemophilia herself and that her experience was far from typical. Tracye realized that misdiagnosing women as carriers rather than having an actual bleeding disorder results in incorrect treatment during labor, delivery, and post-delivery, leading to unnecessary suffering and potentially life-threatening situations.
Subsequent Childbirth Experiences
Tracye’s subsequent experiences with childbirth were significantly different. Precautions were taken, which sometimes proved frustrating. She was unable to take certain medications, resulting in enduring pain. Her hospital stay extended to a week, with frequent blood tests and the need for bleeding disorder medications and anti-clotting medications. Multiple needle pricks daily caused her veins to appear bruised, and the surgical process differed from her first delivery as she was sedated instead of receiving an epidural. When she woke up in recovery, she couldn’t immediately see her baby’s face.
Addressing Unmet Needs and Communication Failures
During her second delivery, Tracye’s confidence was higher due to increased awareness, but the pain was more intense as she couldn’t take medications. She was advised to return for a check-up after a week but didn’t. Tracye also experienced postpartum complications, including swelling in her feet, legs, and ankles, and a lack of emotional support specific to her condition. She believes that emotional support should be an integral part of postpartum care for women with bleeding disorders. Tracye plans to have a conversation with the healthcare professionals involved to address these issues. Communication failures and a lack of a comprehensive treatment plan for aftercare were evident, causing confusion and conflicting instructions on treatment administration. Tracye emphasizes the importance of close communication between the ObGyn, hematologist, and patient to ensure proper care.
Concern for Family and Future Generations
Tracye’s family has a significant history of bleeding disorders. Her father and five of his brothers had hemophilia and died from brain aneurysms at relatively young ages. Tracye’s primary concern is her son’s well-being, including his medication and symptom awareness. She is part of an organization called HOG (Hemophilia Outreach Group), which provides support through outreach nurses and social workers, education for teachers on hemophilia, and activities such as summer camps for children with bleeding disorders. Tracye is also concerned about the possibility of her daughter having a bleeding disorder, but physicians have advised that it is premature to conduct tests at this time. Tracye herself has undergone multiple surgeries due to bleeding during her menstrual cycle, and she firmly believes in raising awareness among women who care for individuals with bleeding disorders. It is crucial for them to be knowledgeable about symptoms and get tested themselves. Tracye’s experiences underscore the need for better education and access to appropriate care for women with bleeding disorders and their families.
Conclusion
Tracye’s personal journey highlights the challenges faced by women with bleeding disorders and the importance of accurate diagnosis, comprehensive care, and emotional support. Her experiences have fueled her commitment to advocating for these women and their families, promoting awareness, and improving access to appropriate healthcare.