Women can and do have bleeding disorders. Bleeding disorders among females may cause special challenges because of the bleeding associated with menstruation and childbirth. Menorrhagia is abnormally heavy and prolonged menstrual period and is the most common symptom among females with a bleeding disorder.
It is important for women who suspect a bleeding disorder to be seen by a physician for testing, diagnosis, and treatment. Proper treatment and care for women with bleeding disorders is available and can greatly impact and improve quality of life.
This tool kit contains resources, specifically for women, to help with taking that first step toward finding answers to their bleeding issues. Tools that are included in this kit:
- Presentations (recorded webinars & videos)
- Tools (mobile app, online assessments, directory of providers)
- Articles and pdf’s (articles, brochures, documents)
- Links to other resources
|Webinar: Making Strides Toward Improving Care of Women and Girls with Bleeding Disorders: This Webinar will provide an introduction and an overview of the Foundation for Women & Girls with Blood Disorders (FWGBD) as well as an overview and update regarding it’s WGBD Clinics of Excellence Directory project. The Directory identifies HTCs that offer services for women and girls and those that have specific Women & Girls Bleeding Disorder (WGBD) Clinics. The Webinar will also highlight one example of a clinic of excellence, The Young Women’s Hematology Clinic at Nationwide Children’s Hospital in Columbus, Ohio, and will describe how the providers at this clinic are working together to improve the care for young women with bleeding disorders.|
|Webinar: You Can Do it! Self-Advocacy Tips for Women: This webinar was hosted by our Blood Sisterhood and Advocacy team and provided communication strategies for women with bleeding disorders. Katie Verb, HFA’s Associate Director for Advocacy & Government Relations offered women effective strategies to become stronger communicators for their own health. Janet Chupka, HFA’s Blood Sisterhood Program Manager, provided an overview of the resources and services HFA has available, and ways to get involved.|
|Webinar: Empowering Women with Bleeding Disorders: In this Blood Sisterhood webinar, The Foundation for Women and Girls with Bleeding Disorders presented about their organization’s mission, reviewed studies they have conducted, and provided effective ways for women to better collaborate and communicate with their provider.|
|Webinar: It’s Genetics: Baby! In the ever-changing bleeding disorder landscape, it is comforting to be prepared. Meg Bradbury, genetic counselor, presented an overview of bleeding disorder genetics, genetic counseling and testing options. Meg also shared the benefits to genetic counseling.|
|Webinar: Diagnosis in 16 years; A Public Health Crisis: Quality clinical services, specifically for women and girls with bleeding disorders, are key to accurate diagnosis, reducing complications and diminished quality of life, and improving women’s health. The Hemophilia Federation of America’s (HFA) Blood Sisterhood program in partnership with the Foundation for Women & Girls with Blood Disorders (FWGBD) produced this important webinar to learn how the FWGBD is working to ensure proper diagnosis, optimal management and treatment of women and girls with blood disorders through special initiatives with the 135 federally funded Hemophilia/Hemostasis and Thrombosis Treatment Centers (HTCs) across the country. This webinar provides an introduction and overview of WGBD Clinics of Excellence Initiative and Directory Project. The Directory identifies HTCs that offer services for women and girls, and those that have specific Women & Girls Bleeding Disorder Clinics.|
|Webinar: Managing Care for Women with Bleeding Disorders: It is important and vital that women who are symptomatic carriers, have hemophilia, von Willebrand Disease (vWD), or other rare clotting conditions have a voice in the bleeding disorders community. During this Blood Sisterhood webinar, Dr. Robert Sidonio from Vanderbilt University discusses treatment and management options for women with rare bleeding disorders and shares the results of recent studies that he just conducted.|
|Webinar: Women and Bleeding: Challenges of Hemophilia Carriage, VWD, and Other Rare Bleeding Disorders: This program provides evidence-based, practical information on the signs and symptoms of bleeding disorders, specifically Hemophilia Carriage, VWD, and other rare bleeding disorders, in women and girls. It will discuss the prevalence of these symptoms, and describe the accurate evaluation of, including laboratory assessment of, and the clinical management of these bleeding disorders among women and girls for optimizing their quality of life. The discrete impact of these conditions on women and girls, as well as the best diagnostic tools, optimal therapies and treatment guidelines will be presented. Healthcare providers will also be introduced to the Hemophilia Federation of America’s approved mobile application as an important collaborative tool that they can put into the hands of their patients to help them more effectively track their bleeding.|
|Webinar: Raising Girls with Bleeding Disorders: Raising girls is a tough job. It is an even tougher job when your daughter has a bleeding disorder. Please join us for this opportunity to hear from parents and women and learn how they’ve tackled some of the biggest challenges women and girls face in the bleeding disorder community. Panelists will share stories of: • A day in the life of raising a daughter with a bleeding disorder • Self-infusion/treatment • Issues in accessing care for girls • Coping with puberty/menstruation • Managing school issues Panelists will discuss the difficulties they have faced, and how to remain resilient when facing these challenges. Listening to other parents and women who have shared similar experiences can help to ease your nerves and concerns you may have while raising your daughters.|
|Sisterhood app: This mobile was created and developed by HFA to support women in their tracking and logging of their menstrual and non-menstrual bleeds. Features of the app include detailed product strength tracking, period reminders, symptom logging, photo add feature and the app is available in Spanish. Data logged on the app is easily emailed to the user who can then share this information with their provider. The app is free to download and available in the iTunes and Google Play stores.|
|HFA/FWGBD MORE brochure: This brochure was designed for patients to give to their providers to help educate them about bleeding disorders in women.|
|HFA/FWGBD Brochure: This brochure, for patients, will help identify signs and symptoms of a bleeding disorder, where to get help/treatment and what to expect at your Dr. visit.|
|Bleeders Bill of Rights: This tool is about self-advocacy and empowerment. It is a document for us, the people of the bleeding disorders community, as we face major barriers to healthcare access. Use it to remind yourself of your rights, your choices, and your power. The Bleeders’ Bill of Rights identifies the real needs of the bleeding disorders community, in our own language. In this, we recognize our ability, responsibility, and right to have a voice—and our responsibility as a community to raise our collective voice. Let us be heard!|
|Comprehensive Clinic Checklist: As part of your or your child’s bleeding disorders management, it is customary to be seen by your healthcare provider or Hemophilia Treatment Center at least once a year for a comprehensive clinic visit. At this visit, a hematologist, a nurse, a physical therapist, and a social worker typically see patients.
This fillable resource will help you organize your questions and concerns before, during, and after your clinic visit.
|Tips & Tricks for Smoother Infusions: Finding a vein to administer clotting factor is not an easy task. This resource was originally created for parents of children with a bleeding disorder to provide helpful tips & tricks for smoother infusions, but applies to anyone with a bleeding disorder.
This extensive list was compiled by families in the bleeding disorders community and medical professionals with years of experience making infusions more successful.
|HFA Dateline Articles:
Women’s Bleeding Disorders: This article from HFA’s Dateline publication provides some common signs and symptoms of bleeding disorders in women, as well as some of the more common types of bleeding disorders that women can experience.
Genetic Counselling: What You Never Knew You Needed To Know: This article from HFA’s Dateline publication explains what genetic testing is, the role of a genetic counselor, and how to find a genetic counselor.
|Self-Administered Bleeding Assessment Tool: The Self-BAT (self-administered bleeding assessment tool) is a scientifically validated scoring tool developed by Dr. Paula James targeted at individuals who are concerned about bleeding. Taking this test will help you better understand whether current, or previous, bleeding episodes are normal or abnormal.|
|Clinics and Services for Women and Girls with Bleeding Disorders: Women and Girls Bleeding Disorder (WGBD) Clinics of Excellence are clinics that have programs and services focusing specifically on the identification, diagnosis, management and treatment of women and/or girls with bleeding and other blood disorders. The Foundation of Women and Girls with Blood Disorders created this directory to assist women in locating these clinics.|
|Betteryouknow.org is a website for women and men who may experience symptoms of a bleeding disorder but have not been diagnosed. With this site, the National Hemophilia Foundation (NHF) hopes to raise awareness and knowledge of bleeding disorders as part of our Better You Know campaign. Throughout the site, you’ll find a risk assessment, tools, and other information to learn whether you are at risk for a bleeding disorder and the next steps you can take to seek care.|
|Surveillance of female patients with inherited bleeding disorders in United States Haemophilia Treatment Centres: Inherited bleeding disorders are especially problematic for affected girls and women due to the monthly occurrence of menstrual periods and the effects on reproductive health. Although heavy menstrual bleeding (HMB) is the most common manifestation, females with inherited bleeding disorders (FBD) experience other bleeding symptoms throughout the lifespan that can lead to increased morbidity and impairment of daily activities. The purpose of this article is to describe the utility of a female-focused surveillance effort [female Universal Data Collection (UDC) project] in the United States Haemophilia Treatment Centres (HTCs) and to describe the baseline frequency and spectrum of diagnoses and outcomes.|
|Both Hemophilia Health Care Providers and Hemophilia A Carriers Report that Carriers have Excessive Bleeding: Previous reports of Hemophilia A carriers suggest an increased bleeding tendency. Our objective was to determine the attitudes and understanding of the Hemophilia A carrier bleeding phenotype, and opinions regarding timing of carrier testing from the perspective of both medical providers and affected patients. Data from this survey was used as preliminary data for an ongoing prospective study.|
LINKS TO RESOURCES
|Hemophilia Federation of America Blood Sisterhood Program: Women have been the silent “carriers” of hemophilia and lived with undiagnosed bleeding disorders for too long. HFA is committed to providing women with the information and support they need to reach a diagnosis and continue that support through the stages of their life with a bleeding disorder.
The Blood Sisterhood program was established to help meet this need for women. A main component of the program is a peer network of women who support women with bleeding disorders on their life’s journey through diagnosis, treatment and day to day living. Ultimately, through furthering the conversation among women, we seek better health outcomes and a better quality of life for women with bleeding disorders.
|Foundation for Women and Girls with Bleeding Disorders: A single site, single source for physicians and healthcare providers. Provider education, across disciplines, is the focus of the Foundation. This benefits women and girls by educating their providers.|
|Let’s Talk Period: Let’s Talk Period aims to increase awareness of the signs and symptoms of bleeding disorders. Through her internationally recognized research program at Queen’s University, Dr. James, Hematologist at Kingston General Hospital, and her team have developed a self-administered bleeding assessment tool (Self- BAT) that will help inform people about their bleeding and guide them toward the help they need.|
|National Hemophilia Foundation’s Victory for Women with Blood Disorders: Providing services and support to women in the bleeding disorders community.|
|National Center on Birth Defects and Developmental Disabilities: A division of the CDC that focuses on protecting people who are especially vulnerable to health risks – babies, children, people with blood disorders, and people with disabilities.|
|National Institute of Health/National Heart, Lung and Blood Institute: The Blood Diseases Branch supports research and training programs focusing on a wide variety of blood diseases and is interested in finding effective treatments for bleeding disorders. The Branch supports research on hemophilia and von Willebrand Disease.|