It was the mid-1970s when 10-year-old Jennifer DeGlopper went in for a routine tonsillectomy. After the procedure, she experienced bleeding near the incision.

“It’s nothing to worry about,” the doctor told her. “It should stop in the next few hours.”

So she went home.

But the bleeding didn’t stop and DeGlopper’s family started to panic as their daughter began vomiting blood.

That event led to DeGlopper’s eventual diagnosis of hemophilia B, the rarest and most severe form of the bleeding disorder.

Hemophilia (sometimes spelled haemophilia) is a rare condition in which the blood’s ability to clot and stop bleeding is impaired because of low levels of clotting agents in the bloodstream.

With hemophilia, a bump or bruise or a seemingly simple medical procedure like a tonsillectomy becomes life-threatening.

“My family had no idea what to do,” said DeGlopper.

And not as much has changed as one might think. Even in 2022, a disconcerting number of unknowns mark the disorder, and its past makes it difficult for women to obtain a diagnosis, which they need in order to be treated.

DeGlopper’s tonsillectomy sent her on a stumbling journey through a rare condition that she hopes to help lead other women through today, almost 50 years later.

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Writing her reality

Because of the medical innovations over the past decade, today DeGlopper has far outlived her “estimated lifespan.”

Cedric Hermans, head of the division of hematology at the Hemophilia Center of the Saint-Luc University Hospital in Brussels, Belgium, has dubbed the last decade, “The Golden Age of Hemophilia.”

Social media has fostered a supportive hemophilia community and medical advancements— including long-lasting remedies — have been developed to create a better life for people with hemophilia.

Now 57 years old, DeGlopper’s an online Scrabble champion, a biker, a writer — and one of the lucky ones, she says.

DeGlopper, who lives in Punta Gorda, Florida, now takes medication derived from blood products — which wasn’t always available or safe — for those with hemophilia.

DeGlopper has two bleeding disorders — hemophilia B and von Willebrand disease, which also impairs clotting, as well as a genetic connective tissue condition called Ehlers-Danlos syndrome. She’s just beginning to share her story.

Even though she’s come a long way, she believes the quick advancements left a gap for women. She says the disease’s history makes it difficult for females to get a proper diagnosis and treatment, even today.

“I wasn’t sure how public I wanted to be with all of this,” DeGlopper told Deseret News. “Sometimes there’s the thought that when you write about things like this, you are looking for attention or sympathy and that’s not why I’m writing. I’m writing because I want people to be aware.”

Jennifer DeGlopper rides her bike in Florida as a low-impact form of exercise to protect her knees, which is important because of her hemophilia diagnosis. Riding the bike is one of her favorite hobbies. | DeGlopper family photo

In November 2021, DeGlopper started her Hemophilia Today by BioNews column, “Hemophilia and Me,” under the pseudonym “Jennifer Lynne” to raise awareness for women in the hemophilia community.

“I have experienced diagnosis and treatment issues, several near-death events and lived through the early days of the AIDS crisis,” she wrote in her introductory article to the column.

In the early ’80s, not long after DeGlopper’s diagnosis, HIV and AIDS were discovered. They infected the blood supply and killed thousands within the hemophilia community who relied heavily on donated plasma and blood as the primary source of treatment for their hemophilia.

Ninety percent of those with severe hemophilia like DeGlopper’s were infected due to the tainted supply of donated blood, according to the Indiana Hemophilia and Thrombosis Center.

“It was ironic,” DeGlopper told Deseret News: The treatment that was at first saving lives took a quick turn and instead of helping people, “took way too many lives.”

“AIDS” was a buzzword of fear, not just because of the death toll, but because of the illness’s link to the then-stigmatized LQBTQ+ community.

DeGlopper continued treatment and was screened every six months for the virus, but never got it. Because of the prejudices, she says, she closely guarded her hemophilia diagnosis and didn’t talk to those outside her close family about the medical condition.

She called those experiences “social life mishaps” and is quick to say that she has used them for good and maintains a positive outlook.

Now she writes openly about her condition and hopes that by telling her story, she’ll make a difference for those women who need help like she needed help then.

Even now, women have had to jump hurdles to get a diagnosis because it’s been taught for so long that hemophilia is a man’s disease.

“They would put different labels on it,” said DeGlopper. Labels like “carrier” or “symptomatic carrier,” would be used instead of “hemophilia.”

This is problematic because to get treatment and receive financial help for the “insanely expensive” treatment, a diagnosis is required.

“As a woman with hemophilia, I believe it’s time to bring awareness to these issues,” DeGlopper wrote.

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A man’s disease?

Many people in history — including the royal families of England, Russia, Germany and Spain — were described as having a problem with severe bleeding, but it wasn’t until the early 1800s that a bleeding pattern was identified and named hemophilia, according to the U.S. National Hemophilia Foundation

Since then it’s been tracked through symptomatic men.

“Historically, females weren’t recognized as being affected (by hemophilia) until more recently,” said Dr. Jessica Meznarich, a specialist in pediatric hematology and oncology at Primary Children’s Hospital and medical director of the Utah Center for Bleeding and Clotting Disorders at Primary Children’s Hospital.

For a long time, hemophilia was thought to be very specific to men because of the link to a mutation on the male’s lone X chromosome. 

Science said that women couldn’t be affected because the healthy X chromosome would correct the mutation of the second X, which only women carry. 

Women were believed to be immune and were labeled as “carriers” of the mutated gene because mothers pass on the mutated X chromosome to their sons, who then have hemophilia.

The label “carrier” adds to the outdated, incorrect belief that women couldn’t have the condition, leading to a lack of medicine and/or resources for those women, said DeGlopper.

“It’s a dangerous word to call someone a carrier,” she told Deseret News, because it could affect if that person can get treatment.

Meznarich agrees that the term can hold a sort of prejudice. 

“I would advocate for calling someone with a (clotting) factor level that’s low a mild hemophiliac versus a carrier,” she said. 

Helping women with hemophilia

Only within the past five to 10 years has there really been a movement to equalize the field for men and women within the hemophilia community, said Meznarich.

“Now it is recognized more and more,” she said, “and there’s been a push from the National Hemophilia Foundation and other organizations to more recognize that females can be symptomatic and that their treatment can be similar to their male counterparts, as well as (women can) have additional, specific, bleeding symptoms during menstruation and birth that males don’t deal with.”

The federally funded Utah Center for Bleeding and Clotting Disorders at Primary Children’s Hospital started a program in September 2020 that combined the efforts of the pediatric gynecology department and the hematology department.

For patients with hemophilia struggling with symptoms such as heavy menstrual bleeding, a representative from gynecology and one from hematology team up and bring their expertise in a combined effort to create the best outcome for the patient.

This program is meant to better help young females with hemophilia find solutions to heavy period bleeding and birthing complications that can happen later in life.

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For DeGlopper, severe bleeding during her monthly period was devastating and it’s a topic she’s passionate about because she wishes she had known more.

“We need a greater realization that hemophilia does occur in women. And anyone out there having a hard time with unexplained bleeding problems, I would encourage them to be screened and tested,” DeGlopper said. “There is treatment and there is hope.”

Is a cure in sight?

Less than 100 years have passed since hemophilia was categorized into types A and B, per the National Hemophilia Foundation.

Adam Wufsus, the medical director of rare bleeding disorders at Novo Nordisk, said that “many of today’s treatment options were not possible 10 years ago,” let alone 100 years ago.

“Once a very serious condition with a heavy burden, high unmet need and low life expectancy,” wrote Wufsus in an email to Deseret News, “now, many people with hemophilia can move closer to a life that is beyond their bleeding disorder.”

Even though the advancements have been life-altering for those who have hemophilia, a cure still hasn’t been found.

Novo Nordisk is one of many organizations that have been working to improve treatments and find a cure.

Gene therapy has been the closest thing to a cure and has been approved by the U.S. Food and Drug Administration, the national foundation reports.

“Gene therapy remains an exciting promise of the future, yet also presents with many questions that need to be answered,” Wufsus told Deseret News by email. “More clinical advancements in the space are needed in order to answer the questions that remain.”

Jennifer DeGlopper still has a lot of questions about the future, but remains hopeful about what she sees happening and said she will continue to write to raise awareness about women with hemophilia.

“These women need to not be brushed off,” said DeGlopper.

Correction: An earlier version of this story incorrectly spelled Jennifer DeGlopper’s name. It should be “DeGlopper,” not “Glopper” as originally stated.