WHAT IS HOPE FOR HER FUTURE?
Our mission is to unite and empower women affected by bleeding disorders, leveraging our shared experiences and passion to drive meaningful change in the healthcare landscape. We are dedicated to advocating for early and accurate diagnosis, equitable access to care, and innovative treatments. Through education, collaboration, and relentless advocacy, we strive to create a future where every woman with a bleeding disorder receives the care, recognition, and support she deserves. By paving the way for future generations, we aim to ensure that our efforts today lead to a brighter and healthier tomorrow.
Clinician Referrals
Finding the right doctor can make all the difference when you are living with a bleeding disorder. Studies show that most women are diagnosed with a bleeding disorder in their childbearing years, and it takes roughly 10-20 years to get a diagnosis despite reporting symptoms to 5 or more health care providers. That is unacceptable! The directory below was created so women don’t have to wait decades to be heard, believed, and properly treated.
Every clinician listed below was recommended by a woman with a diagnosed bleeding disorder in our community who wants to make it easier for the next woman to get the care she deserves.
But we need your help! By recommending a trusted clinician who helped you with a diagnosis or treatment, you can help another woman avoid years of searching and frustration.
Please note: Hope Charities does not endorse or guarantee any provider listed below. Recommendations are based solely on the real-world experiences and opinions of women in the bleeding disorders community.
Every clinician listed below was recommended by a woman with a diagnosed bleeding disorder in our community who wants to make it easier for the next woman to get the care she deserves.
But we need your help! By recommending a trusted clinician who helped you with a diagnosis or treatment, you can help another woman avoid years of searching and frustration.
Please note: Hope Charities does not endorse or guarantee any provider listed below. Recommendations are based solely on the real-world experiences and opinions of women in the bleeding disorders community.
Search for Clinicians
If you don’t see a clinician in your area, that simply means no one has submitted a recommendation yet.
Your voice could be the one that fills the gap and guides another woman toward better care!
If you don’t see a clinician in your area, that simply means no one has submitted a recommendation yet.
Your voice could be the one that fills the gap and guides another woman toward better care!
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HOPE CHARITIES WOMEN'S SURVEY FINDINGS
In spring 2025, Hope Charities conducted a survey shining a light on an often-overlooked population: females in the bleeding disorders community. With 150 female responses, patients either diagnosed with a bleeding disorder or related to someone who is, the survey reveals both the triumphs and ongoing challenges women face in getting diagnosed and treated for these life-altering conditions.
Out of the women surveyed, 76% were diagnosed with a bleeding disorder. However, 11.3% suspect they have a disorder but remain undiagnosed, while 12.7% believe they do not have a bleeding disorder.
Out of the women surveyed, 76% were diagnosed with a bleeding disorder. However, 11.3% suspect they have a disorder but remain undiagnosed, while 12.7% believe they do not have a bleeding disorder.
fig. 1
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Diagnosis is rarely straightforward. Figure 1 shows that among those who have received a diagnosis:
● 22.6% waited more than 20 years to finally put a name to their symptoms. ● 23.5% struggled for 10–20 years before receiving a diagnosis. ● 22.6% were diagnosed within 1–10 years. ● Only 31.3% received a diagnosis within the first year of seeking help. |
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Encouragingly, as indicated in Figure 2, 37.4% of survey participants were diagnosed within the last 10 years, suggesting increased awareness and improvements in diagnosing females with bleeding disorders. However, a significantly lower number, only 30.4%, were diagnosed between 10 to 25 years ago, highlighting a historical gap in healthcare recognition in the recent past.
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fig. 3
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Women often had to be persistent to get help, as shown in Figure 3. 35.7% of respondents reported sharing their symptoms with five or more healthcare providers before finally receiving a diagnosis. Another 46.1% had to talk to two to four providers, and only 17.4% were fortunate enough to be diagnosed by the first provider they consulted.
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Learn more about this survey in our most recent Hope Factor issue.
WOMEN'S PODCAST EPISODES
Discover our latest podcast on women with bleeding disorders, where we advocate for better care and provide essential education. Tune in to learn more and join the conversation. Made possible by Genentech.
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PODCAST EPISODES SPONSORED BY GENENTECH
Getting Diagnosed with a Bleeding Disorder: What Women Need to Know
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Download the file here:
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Step 1: Track Your Symptoms
If you suspect you may have a bleeding disorder, begin by carefully documenting:
Keeping detailed notes will help support your case when speaking with healthcare providers.
If you suspect you may have a bleeding disorder, begin by carefully documenting:
- Menstrual cycle patterns
- Duration and heaviness of bleeding
- Frequency and severity of bruising
- Any unusual or prolonged bleeding (e.g., after dental work, childbirth, or minor injuries)
Keeping detailed notes will help support your case when speaking with healthcare providers.
Step 2: Ask for Specific Blood Tests
Advocate for lab work that can detect a bleeding disorder. Recommended tests include:
These tests can often be ordered by a general practitioner, nurse practitioner, or OB/GYN.
Advocate for lab work that can detect a bleeding disorder. Recommended tests include:
- Complete Blood Count (CBC)
- Clotting factor assays
- von Willebrand factor testing
- Platelet function tests
These tests can often be ordered by a general practitioner, nurse practitioner, or OB/GYN.
Step 3: Consult a Hematologist
Once you’ve had initial testing done—especially if any results are abnormal—ask for a referral to a hematologist, preferably one with experience in bleeding disorders.
Note: Many Hemophilia Treatment Centers (HTCs) may require proof of low factor levels before accepting a referral.
Once you’ve had initial testing done—especially if any results are abnormal—ask for a referral to a hematologist, preferably one with experience in bleeding disorders.
Note: Many Hemophilia Treatment Centers (HTCs) may require proof of low factor levels before accepting a referral.
Step 4: Share Your Medical & Family History
Bleeding disorders are often inherited. Bring a detailed personal and family medical history to your appointments. Highlight any relatives with:
- Diagnosed bleeding disorders
- History of heavy menstrual bleeding
- Frequent bruising or prolonged bleeding episodes
Why Diagnosis Can Be Difficult for Women
Bleeding disorders have historically been viewed as “male conditions,” largely because hemophilia is more common and severe in males. As a result, many women’s symptoms—especially heavy periods—are often:
In addition, many healthcare providers lack specialized training to recognize how bleeding disorders present in females. Some patients are even told their symptoms are psychological.
- Dismissed as hormonal
- Misdiagnosed
- Overlooked or normalized
In addition, many healthcare providers lack specialized training to recognize how bleeding disorders present in females. Some patients are even told their symptoms are psychological.
Advocating for Yourself Is Key
Many women must consult multiple providers before receiving a correct diagnosis. Patients frequently report that their first step toward diagnosis came only after they themselves requested blood testing from a general provider.
Once low factor levels are detected, getting an appointment with a specialist—like a hematologist or HTC—becomes significantly easier.
What Happens After Diagnosis?
Even after diagnosis, treatment can vary greatly between providers. Some hematologists have limited experience treating women with bleeding disorders, and approaches can differ.
If you are dissatisfied with your care, it is okay to seek a second opinion. Finding a provider who listens, understands, and is experienced in managing bleeding disorders in women can make a world of difference in your quality of life.
Many women must consult multiple providers before receiving a correct diagnosis. Patients frequently report that their first step toward diagnosis came only after they themselves requested blood testing from a general provider.
Once low factor levels are detected, getting an appointment with a specialist—like a hematologist or HTC—becomes significantly easier.
What Happens After Diagnosis?
Even after diagnosis, treatment can vary greatly between providers. Some hematologists have limited experience treating women with bleeding disorders, and approaches can differ.
If you are dissatisfied with your care, it is okay to seek a second opinion. Finding a provider who listens, understands, and is experienced in managing bleeding disorders in women can make a world of difference in your quality of life.
Email [email protected] if you have any questions.
A Rare Gem With A Common Bleeding Disorder Story
By: Debbie De La Riva
Connie Montgomery turned years of misdiagnosis and systemic bias into a mission of advocacy, becoming a powerful voice for equity and inclusion in the bleeding disorders community.
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Connie Montgomery was diagnosed with Factor VII Deficiency more than 15 years ago at the age of 35. Her story of a delayed diagnosis is all too common for women in the bleeding disorders community. However, in her case, gender bias was only one of the many barriers she faced. The others took the form of racial bias and generational trauma. Her mother was raised in the segregated South. Her life experiences as a Black individual taught her that it is important to appear strong because reaching out for help from others had resulted in being unfairly treated or judged. In other words, being vulnerable was not a safe position for people of color. Connie took her mother’s warnings of the perils of prejudice, biased treatment, and negative stereotyping to heart, and it shaped how she dealt with bleeding episodes. When she had nosebleeds at school, she would run to the bathroom and try to control them by herself. During her teenage years, she suffered from heavy, painful periods that often resulted in bleeding through her clothes at school. This happened so frequently that Connie would pack extra clothes weekly, and sleepovers at friends’ houses were not permitted. Her mother was aware that her daughter’s bleeding episodes were excessive and took her to the doctor on several occasions. However, each time it resulted in the doctor telling them they were lying about her concerns and did nothing to help. This experience deepened her mother’s belief in the existence of racial and gender biases and Connie was told to “keep her problem inside the house.”
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As an adult, Connie continued to suffer from heavy periods and had excessive bleeding after two emergency c-sections during childbirth, resulting in grave danger. Yet, she never sought help for these ongoing issues due to being told her symptoms were not as bad or significant as she was stating they were. She became anemic and always felt tired. It was not until a car accident at the age of 35 that her life took a pivotal turn. As a result of a hospital stay and complete exam, Connie discovered that she had two serious chronic conditions: Factor VII Deficiency and Pemphigus Vulgaris. Although this helped Connie understand her experiences of excessive bleeding, she had a great deal of difficulty accepting that she had two rare chronic illnesses. Because of the messaging from her mother and uncaring healthcare clinicians when she was younger, these diagnoses were met with denial and depression. To make matters worse, seeking emotional help was frowned upon by her race and religious cultural upbringing on top of the fact that people in the African American/ Black diaspora were already subjected to hardships associated to systemic racism, redlining, healthcare disparities, and a significant wealth gap.
Eventually, Connie decided she needed to seek help for her bleeding issues and went to a local hematologist. However, this physician was skeptical of whether a woman could have a bleeding disorder. He refused to prescribe medication to control her bleeding until she brought back a detailed log of her bleeding episodes for several months. Thankfully, her next hematologist, a woman with a bleeding disorder herself, understood Connie’s struggles and made it much easier to access necessary medication treatment, which she continues to this day.
Eventually, Connie decided she needed to seek help for her bleeding issues and went to a local hematologist. However, this physician was skeptical of whether a woman could have a bleeding disorder. He refused to prescribe medication to control her bleeding until she brought back a detailed log of her bleeding episodes for several months. Thankfully, her next hematologist, a woman with a bleeding disorder herself, understood Connie’s struggles and made it much easier to access necessary medication treatment, which she continues to this day.
