Four years ago, I relocated to a rural community. My hemophilia treatment center (HTC) was six hours away, so I met with a local hematologist to come up with a plan for treatment.
I am a woman. I was speaking to a female physician who specialized in hematology and oncology. When I mentioned the necessity of factor VIII products in emergency situations or prior to surgery, she replied that it would be a shame to waste expensive factor on me when I have 20 percent of my own.
I was shocked and furious. I later learned that my experience was all too common among my blood sisters who were also seeking appropriate medical treatment.
I asked the hematologist, “Why would you leave me at 20 percent factor VIII but bring a male with severe hemophilia up to 100 percent? Don’t we both deserve to be protected at 100 percent factor VIII levels?”
She responded that she hadn’t thought of that.
Female-sensitive hemophilia treatment
When women with hemophilia look to their closest HTC for assistance, some have empowering experiences. Others leave frustrated and discouraged.
Not all HTCs are created equal. Some have clinics devoted to women and girls with bleeding disorders. These clinics often provide specialized, sensitive care. Other HTCs, particularly those serving primarily adult males, have not gracefully transitioned to acknowledging and addressing the needs of women with hemophilia.
Tips for women looking for care
- Know when it is time to move on: If you are hearing things like, “Women waste expensive factor,” “Women with mild hemophilia cannot get spontaneous bleeds,” or “Your pain and bleeding are not real,” it might be time to consider relocating. You have the right to pursue treatment from a center that acknowledges the needs of women with hemophilia. Do not be afraid to travel. I drive eight hours each way to get to my HTC, but it’s worth it.
- Find a female-sensitive clinic: Some HTCs have special clinics for women and girls. These clinics often have both a hematologist and a gynecologist on staff to meet with patients about bleeding issues. These clinics tend to be more progressive and proactive when treating women with hemophilia.
- An attitude of openness: I have found that I do better with my medical teams if I come with an attitude of openness. It can be hard if you’ve had bad experiences in the past, but I believe in the power of starting over and giving a new team a new chance. This means letting go of the anger that comes from the betrayal of past medical teams.
- Be patient: It is highly unlikely that you will create the perfect treatment plan immediately. Your HTC needs to get to know you as an individual, which takes time. It may take multiple visits over many months for your treatment team to see the bigger picture. Demanding specific treatments early in the relationship could backfire depending on your circumstances.
- Document everything and share often: I documented everything upon meeting my new HTC team. I showed photos of wounds that hadn’t healed, scabs that hadn’t formed, bruises, joints that were swollen before and after factor, and more. I emailed my HTC and asked them to place the pictures in my records so we could discuss my bleeding patterns in the future.
- Ask for help: Do not be afraid to reach out to your team and ask for assistance when you need it.
- Remember to say thank you: Medical care is a stressful field. It means a lot to professionals when they are shown appreciation. When you finally find a team that supports you as a woman seeking treatment, do not forget to let them know the difference they are making in your life.
- Don’t give up: I know women who have been to five or more HTCs or hematologists before finding the care plan they needed. You have the right to appropriate care. Seek a medical professional who understands and will advocate for your care.
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 Services, and are intended to spark discussion about issues pertaining to hemophilia.