We should always take some time to focus a little on ourselves and our needs. Creating “me time” for that visit to the salon, the mall, or the library is critical. However, I am specifically referencing the need for the women in our community to have awareness and knowledge about their bleeding disorders, to develop a voice to be heard, to stand up for their needs, and to make things happen.
The science of bleeding disorders has come a long way, accelerating over the past 10 years. Gene therapy, once a daydream, is a reality. Subcutaneous prophylaxis is possible and effective for so many. Increasing numbers of infants, children and adults with bleeding orders are leading “normal” lives – playing sports, attending college, pretty much like everyone else. Since every human being has some medical issue, why is having a manageable bleeding disorder any more or less devastating or embarrassing than having asthma or diabetes?
Women’s bleeding issues require the same attention that is paid to the needs and challenges of our fathers, husbands, and sons. And we – the moms, the aunts, the teens – must be the agents of change.
There is still a lack of awareness on the part of many in the medical community that women can and do have bleeding disorders and that some of the most common issues that force a woman to go to the doctor, such as heavy periods and iron deficiency anemia (fatigue, paleness, dizziness, shortness of breath), can be understood by the evaluation for, and identification of, a bleeding disorder. This recognition results in appropriate management and stronger, healthier women.
It’s very easy and reassuring to keep reiterating, “Everyone in my family bruises easily, has nosebleeds, and heavy periods, so this is normal.” What is normal? While caring for our children or spouse with a bleeding disorder, we need to acknowledge and embrace that WE may also have a bleeding disorder and must seek care for ourselves as well.
Become familiar with symptoms that can point to a bleeding tendency and insist that your physician listen and act! As with everything female, reproductive bleeding is a hallmark.
Periods that last at least 7 days
Periods that require a change in sanitary product every 1-2 hours for a few (or all) of the days
Soaking through pads, doubling up pads and soaking through clothing or bedding
Passing grape-sized clots
History of recurrent nosebleeds – particularly nosebleeds that started as an infant or toddler
Unexplained bruising in odd places (chest, back, hips) without trauma
Fatigue, shortness of breath, pallor
Postoperative bleeding that was worrisome to healthcare providers and raised the need for a transfusion or required a return to the operating room
If you’re technologically savvy, many good menstrual tracking apps are available. Otherwise, there’s the good old-fashioned calendar page. Pay attention to patterns of interval, duration, and intensity. Are you using aspirin or Advil for pain? If so, how much and how often? What supplements are you taking? Excessive garlic, ginger, or ginseng intake can cause a coagulation defect and lead to bleeding.
There are nearly 150 Hemophilia Treatment Centers in the United States. For a complete list including contact information, visit the CDC at www.cdc.gov.
Specifically inquire if your HTC has either a dedicated women’s program in conjunction with an OB/GYN or works closely with a provider who has an interest in women with bleeding disorders. If not, speak directly with your physician and provide facts and resources.
Work with your HTC team to encourage the development of clinical studies focusing on or including women.
Many organizations offer excellent resources and education for women’s issues.
Attend chapter and advocacy meetings.
Inquire about “meeting” other women in the bleeding disorders community. We can serve as our own mentors!
Take time for yourself to question, learn, and act.
Let’s Talk Period: check out https://letstalkperiod.ca/self-bat/eng/ for a simple bleeding assessment tool, which will let you know if you or your relatives have a pattern suggestive of a bleeding disorder
National Bleeding Disorders Foundation https://www.bleeding.org/
The Foundation for Women and Girls with Blood Disorders https://www.fwgbd.org/
World Federation of Hemophilia https://wfh.org/
CHES Foundation-LadyBugs/SHEmophilia/Hermanas de Sangre https://ches.education/intro
Times change. Information changes.
The Hemophilia Treatment Center network is and has been reaching out to educate providers and practitioners, but we need to be in partnership with you – your words, your experiences, your voices!
Dr. Joanna Davis received her undergraduate degree from Barnard College of Columbia University and her MD from the Albert Einstein College of Medicine. After completing a residency in Pediatrics at Montefiore Hospital and Jackson Memorial Hospital, and a Fellowship in Pediatric Hematology/Oncology at the University of Miami, Dr. Davis joined the faculty at UM. She developed the Pediatric Hemophilia Treatment Center in 1987 and has committed both the Adult and Pediatric programs to outreach and education. She remains the Director Emerita of the Hemophilia Treatment Center.
Dr. Davis has raised awareness and education for thousands through various methods, such as bilingual children’s booklets, book chapters, scientific articles, and educational grants. Identifying and treating women with bleeding disorders is a particular focus of her practice.
The University of Miami HTC has recently completed investigator-initiated research studying joint ultrasound findings in women with bleeding disorders. Additional registries and projects are ongoing. Dr. Davis is also committed to mentoring young physicians and is proud to have trained several new healthcare professionals who have enthusiastically joined the bleeding disorders community.
DISCLAIMER: THIS IS NOT MEDICAL OR LEGAL ADVICE. All information, content, and material is for informational purposes only and is not intended to serve as a substitute for the consultation, diagnosis, and/or medical treatment of a qualified physician or healthcare provider or as legal advice. Please consult a physician or other health care professional for your specific health care and/or medical needs or concerns and never disregard professional medical advice or delay in seeking it because of something you have read here or on our website.
