Story by: Ellen Samek | Illustration by: Beenish Shahab
Pauline Newman is a successful woman in control of her life. She loves her job as financial planner at the Royal Bank of Canada and has a passion for shooting and flying planes. Her ideal afternoon is spent at the shooting range, perfecting her aim. She also has von Willebrand disease (VWD) — one of the bleeding disorder that affects one in 1000 Canadians.
“It never occurred to me that I had anything or that anything was wrong,” Newman says. “It was actually my dentist who pointed out that I might have a bleeding issue when my gums wouldn’t stop bleeding during a procedure.”
VDW is a genetic blood disorder in which a protein in the blood called a von Willebrand factor is either not working properly or is missing entirely, preventing blood from clotting. It’s hard to diagnose but symptom include nosebleeds, bruising easily, excessive bleeding during surgery and dental procedures, heavy menstrual cycles and post-partum hemorrhaging.
The conversation with her dentist led Newman on a frustrating two-year journey in search of a diagnosis. “During one stressful time in my life I had my period for almost a whole year,” she says.
Newman was finally diagnosed in 2008 when she was 26 by Dr. Paula James, a hematologist and clinician researcher at the Kingston General Hospital Research Institute. James was so frustrated by how hard it is to diagnose blood disorders like VWD that she decided to specialize in them.
“I saw a group of patients who were not well cared for,” she says.
James noticed that more women than men were undiagnosed because they think one of the most common symptoms — heavy, debilitating periods — is normal.
“It’s harder to diagnose a woman with a bleeding disorder simply because women have more opportunities in their life to bleed.”
James says she has seen many women go undiagnosed until something goes wrong like complications after surgery or post-partum haemorrhaging. Birth control can also be an issue because it stops a woman’s natural menstrual cycle completely, therefore treating the symptoms but postponing a diagnosis. This is especially a problem because a lot of doctors prescribe birth control to address heavy periods. Birth control pills can also help increase clotting factors. Clotting factors are what’s missing in the blood therefore causing the disease in the first place. This all leads to making an accurate diagnosis difficult while a woman with VWD is taking birth control pills.
Newman’s diagnosis came as a relief and made her realize things she thought were normal were actually symptoms of the disease.
Today she’s in control of her health, but still faces challenges. When she want’s to get her pilot’s licence, her medical clearance took nine months instead of one month. Whenever she goes to the shooting range or to shooting competitions, she must bring her medication in case of an accident. She’s had 15 colonoscopies because of internal bleeding in her colon.
“I face a lot of stigma when it comes to relationships and dating too,” says Newman. “You tell someone you have VWD, they google it and all they see is that you have crazy periods.”
Yet, Newman’s biggest challenge, she says, is the lack of resources in northern Ontario. She currently drives several hours a few times a year for treatment at St. Michael’s Hospital in Toronto.
“There are no clinics for women with bleeding disorders in northern Ontario. I’m one of two women that I know of in northern Ontario who are diagnosed with VWD,” she says. “There are probably more of us, they just don’t know they have it.”
Despite the ongoing challenges, Newman is happy report her healthcare team have told her she is safe to have children in the future.
To help more women get diagnosed, James developed a self-administered bleeding assessment tool (Self-BAT). It’s an online test anyone can take if they think they experience abnormal bleeding.
“Your bleeding score will tell you whether or not you should see a physician for your symptoms,” says James. “Then you can print out your results and take them to your family doctor.”
Megan Conboy, 32, who is one of James’s patients, says taking the Self -BAT changed her life.
After having her second baby, Conboy’s periods became unbearable and heavy.
“I remember crying in my family doctor’s office,” she says. “I was miserable and in pain all the time.”
Both of her births had been complicated with heavy post-partum bleeding, but Conboy didn’t think anything of it. A lot of women have “horror stories” from the delivery room, she says.
“My family doctor couldn’t believe I had VWD,” says Conboy. “It never crossed their mind. I think that just shows the disease is more common than people think.”
James hopes that the Self-BAT will lead more patients like Conboy towards getting a proper diagnosis. The Self-BAT is available on James’ website Let’s Talk Period, which she designed to raise awareness of bleeding disorders a well as to remove the stigma of talking about periods and help women understand what a normal period looks like.
“A period that lasts more than eight days and that stops you from living your life isn’t normal, but so many women stay silent because they think it is,” says James.
Now with her diagnosis, Conboy can move on with her life. She doesn’t have to worry about heavy periods that make her want to curl up into a ball and stay home. She can go about her days working as a nurse and spending time with her beloved husband and sons. And she knows that if she wants to have another child, Dr. James and her team will make the delivery a success.