EQUALITY for in Fighting Healthcare

As the saying goes, looking at how life for women has changed over the past century and a half, there is no question that we’ve “come a long way”. In many nations women can get an education, hold a variety of jobs, join the miliary, vote……

But women with bleeding disorders still may face an uphill battle with health care providers should they seek medical attention for heavy periods or iron deficiency.

Despite the best efforts of the HTC network and organizations like NHF and the Foundation for Women and Girls with Bleeding Disorders, there are many, many health care providers (and “regular” people, too!) who do not believe that women can have a bleeding disorder. How often have you been told that only men have hemophilia - as if hemophilia is the ONLY bleeding disorder and, of course, it only affects men???

By: Dr. Joanna Davis

There was a terrific article by Dr. AC Weyand, which appeared in the medical literature in 2020, entitled “Sexism in the Management of Bleeding Disorders”. Bottom line: this validated what we all know! There is a lack of knowledge that women have bleeding disorders in general and that carrier women CAN have bleeding issues. Until recently, fewer resources were available for women and girls. A very sobering fact was that, on average, it took 16 years between the onset of bleeding symptoms and the diagnosis of a bleeding disorder! While this statistic has probably improved courtesy of the increasing efforts by HTCs and partner patient advocacy organizations, we are all too aware that years may pass while women live with and suffer from bleeding symptoms.

Just a brief list of bleeding disorders which are clearly known to affect women:

• Von Willebrand disease: the most common bleeding disorder worldwide

• Hemophilia A/B carrier: second most common condition to affect women because women who carry the gene for Hemophilia A/B may be asymptomatic OR may have low factor 8/9 levels and actually have bleeding symptoms and mild Hemophilia!!!!!

• Other disorders include: factor deficiencies - V, VII, X, XI, XIII, defects in the fibrinolytic pathway; severe platelet dysfunction including Bernard-Soulier syndrome, and Glanzmann’s thrombasthenia

• There are other, much less common disorders, and your family history is essential in helping your provider make a diagnosis.

The inheritance of these disorders varies. Certainly, management of different disorders in different situations will vary --- specific factor concentrate, platelet transfusions, fresh frozen plasma infusions… Sometimes the bleeding symptoms an affected person experiences differs from one disorder to another. But, for women, the challenges of unusually long and heavy periods cross all diagnostic lines.

The most common issues—outside of pregnancy – which bring a woman to a medical provider are heavy periods and iron deficiency. Fifteen to twenty percent of women with iron deficiency actually have an undiagnosed bleeding disorder!

Recent studies suggest that at least 40% of women with heavy periods --- now referred to as “heavy menstrual bleeding” or HMB –may have an underlying bleeding disorder!!

Determining a bleeding disorder as a cause of or contributing factor to HMB or postpartum hemorrhage (excessive bleeding after childbirth) can change the management, preventing unwanted blood transfusions, and even hysterectomies. (Of course, identifying a bleeding disorder will also improve the management of affected women in case of other, non-gynecologic procedures, or in the setting of an accident or injury.)

DO YOU SUFFER FROM HMB?

Heavy menstrual bleeding—formerly referred to as menorrhagia - is characterized by the following:

Bleeding for longer than 7 days

Flooding or gushing blood that limits daily activities, such as social activities, school, or exercise

Changing a tampon and/or pad every 1-2 hours or less on the heaviest day

For your own information, if you are questioning the need to see your provider...

And, according to the International Federation of Gynecology and Obstetrics (FIGO) -If a woman says her period is too heavy, it is too heavy and should be taken seriously by a health care provider.

Passing blood clots that are bigger than a quarter

Iron deficiency or prior anemia needing treatment

Women have learned to advocate for husbands, sons, and brothers through the decades which saw the birth of the Hemophilia Treatment Center and the advances in the preparation and use of factor replacement therapy, culminating in today’s reality of prophylactic infusions with purified and recombinant concentrates, non-factor therapies and, now, the reality of gene therapy for hemophilia B. As women we are REALLY EXCELLENT at advocating and speaking up for those we love. But how challenging is it to now have to speak up and advocate for ourselves?

We are the ones who need to spread the word and educate not only the public but our health care providers as well.

Have you ever heard of BAT?

How do we do that? It starts, as does everything else, with having enough knowledge to ask questions and to have expectations of how the medical encounter should proceed.

Your provider will “take a history” - ask a lot of questions which should include those focusing on your bleeding issues. It’s not enough to ask, “How are your periods?”

Have you ever heard of a BAT? Neither the wooden stick used to play baseball, nor the winged creatures that fly at dusk, a Bleeding Assessment Tool (BAT), is a structured list of questions designed to gain specific understanding of the frequency and severity of bleeding symptoms.

Here are just a few BAT examples to name:

• bruising

• nosebleeds

• period/postpartum bleeding

These questions may be asked directly, or you may be requested to fill out a form. The answers are scored and, depending on the total number of points, your situation will be ranked as consistent with, or not likely to be consistent with a bleeding disorder. This score will inform the next steps in terms of evaluations and referrals.

• treatment of anemia with iron supplements or transfusion

• surgical bleeding

• diagnosis of iron deficiency https://bleedingscore.certe.nl/

You can Google the ISTH-BAT for an example of one of the more commonly used questionnaires.

Providers who are not part of an HTC are less likely to be aware of this very useful tool. But here are independent questions which will give a lot of information:

1. How old were you/your child at the time of the first period?

2. How many days does your period last?

3. How many of those days would you say are “heavy” flow days?

4. On those “heavy” days, how often do you change your pad or tampon? What kind of pad or tampon do you use ---- regular strength, overnights, super plus, both a pad AND a tampon?

5. Do you ever leak around the pad/tampon, staining your clothes or your bed?

6. Do you pass clots ---- solid-looking chunks of blood? If so, are the clots as big as – or bigger than – a grape?

7. How often do you get your period? How do you keep track of when your period comes - do you “just remember” or do you use a diary? – either a pen and paper notebook, real calendar page, or an app on your phone?

8. Have you ever had nosebleeds? How old were you when they started? How often do you get nosebleeds”? Are they associated with illness/prolonged exercise outdoors? How long do they last? What do you do to stop the bleeding?

9. Do you bruise easily? Where are the bruises - arms/legs, chest/ back? Do you remember having trauma at the sites where the bruising shows up?

10. Have you ever been diagnosed with or treated for low iron? When? For how long? Was the iron supplement taken by mouth or intravenously?

11. Have any women in your family (both your mom’s side and your dad’s side) a. Been recommended or received a blood transfusion due to very heavy periods or low iron? b. Been recommended or received a blood transfusion because of unusually heavy bleeding after giving birth? c. Been recommended or have undergone a hysterectomy as management of heavy menstrual bleeding or unusual bleeding after childbirth?

12. Have you or any member of your family experienced unusual bleeding after dental extractions or other surgeries, which was of concern to the surgeon?

13. Do you take or use any kind of blood thinner, including aspirin? If yes, how much and how often? Why are you using these medications?

14. Did you/your child ever get lumpy bruises with either her baby shots/immunizations or more recent vaccinations?

A suggestion would be that you become familiar with these questions and have your answers so that YOU can present them to your provider for discussion.