Why the Coalition for Hemophilia B is seeking women’s stories
It's time to demand change, says the coalition's COO in an interview
I first met Kim Phelan, chief operating officer of The Coalition for Hemophilia B, in person at a recent symposium in Dallas. From the moment we spoke, I was in awe of her. Despite the hundreds of attendees, she took the time to engage with me personally.
I was captivated by her stories of an unconventional childhood as a member of the Pennsylvania Dutch community. Her warmth and openness made such an impression that I wished it were feasible to invite her over for dinner to continue our conversation.
Kim has dedicated her life to those living with hemophilia B and has been working hard to improve women’s care. I knew I had to reach out when I noticed her calls for photos and stories from women bleeders.
Following are excerpts from an interview I had with her via email:
JL: You’ve been collecting photos and stories of women bleeders. What’s up?
KP: We’re trying to highlight women’s stories across all media channels. We want to hear from women who know they have bleeds but are not being heard, treated, or diagnosed properly.
Why is this important?
I’m boiling mad. It’s 2024, and we’re still not making sufficient progress in diagnosing bleeding disorders in women. It’s incredibly frustrating, and I feel compelled to take action. I cannot remain silent any longer.
Why do women have to wait 10-40 years before diagnosis and treatment? Why must they see three or four, and sometimes five hematologists before they are taken seriously?
When communicating with medical providers, many women feel dismissed and unheard, as if their concerns are being attributed to psychological issues. They seek help from trusted professionals only to be turned away, ridiculed, and forced to suffer in silence. This treatment is both unfair and neglectful, [and it takes] a significant mental and physical toll on them. It’s distressing to witness this injustice. How can we stand by when we know how severe the problem is?
Women with the hemophilia gene do not bleed according to their factor level. That’s true, and we know it. If a man with hemophilia showed symptoms of bleeding, they would get treatment regardless of their factor level. Women are ignored. It’s time to demand change.
What are examples of some of the stories you’ve heard?
The stories I’ve heard break my heart. Women are dismissed and laughed at. Their quality of life is horrible. They have swelling and bruises for no reason, and they are in pain.
Doctors often can’t agree on a treatment plan, leading to inconsistent flip-flopping. For example, one woman was told by her doctor that she needed a procedure performed in a hospital setting, while another doctor said it was unnecessary. When she asked, “How would you control the bleeding?” they didn’t have an answer. She feels dehumanized as if they are using her to test their theories.
One woman told me her hematologist told her she should take factor with her when she traveled but later refused to give it to her.
Another woman is now seeing her third hematologist in search of a diagnosis. She has had 12 surgeries related to bleeding on her knee, but her doctors say she doesn’t have a bleeding disorder, even though her father and her daughter have hemophilia B.
Another woman almost died from her menstrual bleeding. We finally found her a hematologist who would listen. She was in the hospital every month in so much pain, and they wouldn’t give her any pain medication.
One doctor told a woman as she was about to have a C-section, “Let’s see how your body reacts without factor!”
Another woman refuses to take care of her teeth because they will not give her a factor. She has vowed never to see a healthcare professional again.
Women are begging for hysterectomies. One woman’s doctor told her to get pregnant and her bleeding would stop.
Another woman, at age 43, experiences bleeding for three weeks out of the month and sometimes is unable to stand for days. When she sought help, her doctor suggested birth control. When she requested a hysterectomy, her doctor laughed at her.
How can women bleeders contribute?
Send your stories and photos to me at [email protected]. Document everything that is happening with your body and everyone you speak to. Document it all and keep sending it in.
We are receiving photos and stories every day, further highlighting how bad this situation is.
What else would you like to add?
Women diagnosed with hemophilia and receiving treatment need to share their success stories. We must highlight the excellent providers who listen to and treat women. Women have to band together so our voices are heard. We can no longer sit in silence and suffer needlessly.
I see firsthand the extraordinary relief and improved quality of life for women who finally get treated successfully. The barriers to care need to be removed. The old diagnostic models don’t work, and we need to see and treat women through a new lens that will give them a good quality of life.
Thank you, Kim!
Note: Hemophilia News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.
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Comments
Kathy Perkins
Kim is amazing. The first time I met her was at my first Women’s Retreat and I had no idea she was CEO. She helped me find my room and get settled in. She has done so much for the women in the community. Because of what I learned at that first retreat I was able to be more assertive and advocate for myself at my HTC and they listened. The coalition has been a blessing.
Jennifer Lynne
Thank you, Kathy! I love your story - I agree, she is amazing!