Speaking Up for China’s Women with Hemophilia: My Story and Theirs

As the daughter of a man with hemophilia, a woman with mild hemophilia myself, and a former sufferer of heavy menstrual bleeding, I cannot remain silent after discovering the vast gap in awareness and care for women with hemophilia in China.

For 18 years, I never suspected that I might have a bleeding disorder—largely because China’s public education and medical resources on hemophilia are outdated, school textbooks still claim that female carriers never show symptoms. I dismissed my heavy periods as normal and ignored signs like frequent bruising and bleeding gums.

It wasn’t until I came across educational materials from the World Federation of Hemophilia (WFH) that I learned: carriers can indeed be patients.

At 18—seven years after my first period—I used the PBAC method for the first time and found I was losing 200 mL of blood every cycle.
At 18—after living with symptoms for 18 years—I took the BAT bleeding assessment and scored a 7.
At 18—just ten minutes before entering surgery for appendicitis—I had my clotting factor levels tested for the first time, discovering they were only at 12%. The surgery was immediately halted.
At 18—I knew for the first time that, I was, in fact, a person with hemophilia.

And I know I am not alone.

Since April 2024, I’ve been traveling across China giving talks and meeting other women with hemophilia.
Many of them do not speak English, cannot use computers, and have never shared their stories—yet their suffering deserves to be heard.

Today, I would like to share the voices of women in China with WHD stories.

1. The Mother Who Nearly Died Giving Birth

Her body had been crying out for help for years, but no one listened—until she nearly lost her life on the delivery table.

She had always bruised easily, bled from her gums, and had wounds that took too long to heal. These symptoms were dismissed as “just being weak.”

Her first challenge came during the birth of her older son. The bleeding was significant, but her concerns were brushed aside:
“That’s just childbirth—it’s normal to bleed,” the doctors said.

Her son was later diagnosed with hemophilia, and she quietly shouldered the burden of care.

Years later, she had a second son via C-section at a county hospital.

She told the doctor: “My older son has hemophilia—should I be worried?”
The doctor replied: “You’re just a carrier. It’s fine.”

It wasn’t.

That night, blood began pouring from her surgical wound. Her bedsheets were soaked.
Panic broke out. The hospital lacked experience and resources.

She remembers hearing her name faintly through a haze, as she slipped in and out of consciousness.

Later, she learned that she had been issued a critical condition notice.

The wound had split open, and the hospital—unprepared and without coagulation factor VII concentrate—barely saved her life using whole blood transfusion.

Only after this traumatic experience did she discover: her own clotting factor was around 20%.
She, too, was a person with hemophilia.

Later, when she needed heart surgery, she knew she required clotting factor.
But unlike male patients, she could not receive insurance reimbursement. The medication would cost over 100,000 RMB(13,870 USD) out-of-pocket, more than her yearly income.

Looking back, she said:
“Every time a doctor dismissed my concerns, every time I got lucky, it was my life they were gambling with.”

2. The “Carriers” Who Bled Away 90% of Their Blood Each Year

One girl from northern China wore thick cotton pants in winter—yet her legs were always covered in large bruises.
Another, from the south, loved jump rope and dancing—but was constantly sore and bruised after play.

The northern girl told herself the blood when brushing her teeth was “just sensitive gums.”
The southern girl thought her childhood nosebleeds were just clumsiness.
Both were anemic and fatigued. Both were told: “It’s just your constitution—be strong.”

Both daughters of hemophiliacs. Both thought they were alone.

Until one day, they met—and realized they shared the same invisible story.

They talked about hiding their symptoms from family, doctors who said: “You’re just a carrier—nothing to worry about,” and the shame they felt about needing accommodations in dating, work, and life.

The northern girl feared hospitals—until she fainted from iron-deficiency anemia(IDA).
The southern girl actively sought care—yet most doctors had never heard of women with hemophilia.

The northern girl used 25 daytime and 6 nighttime pads per cycle. She had to wake up at night to change them.
The southern girl regularly stained clothes and bedsheets, experiencing dizziness and exhaustion during her period.

When they finally estimated their blood loss using PBAC:

The northern girl lost 187 mL per cycle,  she lost 85% of her body’s blood volume yearly—equivalent to 4.8 bottles of 500mL
The southern girl lost 203 mL, lost 92% yearly—that’s 5.2 bottles.

The northern girl never tested her factor IX level.
The southern girl tested her factor VIII—only 19%.

They were not merely “carriers.”
They were women with hemophilia.

3. The Little Girl Who Can’t Play Sports

“I can’t run or play soccer. If I get hit on the head, it could be very dangerous.”
—Ningning, 7 years old, diagnosed with Factor VII deficiency

We met Ningning, a bright, cheerful first grader who loves drawing(image attached).
She enjoys light games like hopscotch and tag—but knows not to do anything that might cause bleeding.

At age 3, she had a nosebleed that lasted two days, ending in a collapse.
Her parents were sent from county to city hospitals, only finding help in a major hospital in Guangzhou.
Her mother recalls: “There was so much blood, it even came out of her eyes.”

Ningning was diagnosed with a rare bleeding disorder: Factor VII deficiency. Since then, her family has faced tremendous pressure.

The targeted treatment—Factor VII concentrate—is not yet produced in China. The only available option is an imported American drug, priced at 5,000 RMB per dose(693 USD), equivalent to the family’s entire monthly income.
Unable to afford this regularly, they turned to a cheaper alternative: a domestic “complex concentrate”, costing a few hundred RMB per dose.
It is less effective and comes with greater side effects—but with no domestically approved Factor VII yet available, they had no other choice.

Ningning is used to injections now. She says: “It doesn’t hurt if I stay still.”
She’s braver than many adults—but she shouldn’t have to be.

She is one of hundreds of thousands of girls and women with bleeding disorders in China, still too “invisible”—to doctors, to insurance systems, to society.
They long to run, dance, and go to gym class—but they need more awareness, compassion, and policy change.

4. The Teen Girl Who Needs Injections with Every Period

Tingting’s very first period was a crisis. She bled so heavily she couldn’t stay in class.
The blood soaked her seat. She nearly fainted.

She was hospitalized and eventually diagnosed with rare Factor VII deficiency.

Now, every month, she needs injections to control the bleeding.

She’s traveled from hospital to hospital, relying on medication just to live a normal school life.
But after physical activity—running or sports—she suffers severe joint and muscle pain.
No matter how hard she trains, she’s unable to complete her physical education exam.

Her mother says:
“She’s academically strong, but missing 20 points in the high school entrance exam’s PE section might ruin her chances.”

They’ve tried hormonal treatments, but the side effects were too severe.
Now, she comes home after school during her period to receive clotting injections.

When clinics refused to administer the shots, her mother learned to do it herself.
“I’m better than the nurses now,” she jokes.
Their fridge is filled with medicine, not food.

Each vial costs hundreds of RMB. She needs over ten a month. None are covered by insurance.

These stories represent only a fraction of the women I’ve met. They are strong, but they should not have to suffer in silence.

Girls and women with bleeding disorders have long been overlooked in global care systems, and even more so in countries where diagnostic and treatment resources are limited.
In China, many are still undiagnosed, misdiagnosed, or under-treated simply because of their gender.

We established a organization named WGH38417 in China. You could see our efforts at our website. Contact me via Reddit.

We call on the global bleeding disorder community—researchers, clinicians, policy advocates, and patient leaders—to:

• Support more research into how bleeding disorders affect females, especially in underrepresented populations, with funding support to cover essential laboratory testing and data collection—steps that are foundational to accurate diagnosis, care planning, and meaningful advocacy;
• Authorization to translate and distribute educational materials in Chinese, so we can better inform healthcare providers and empower affected individuals and families across the country;
• Professional guidance and collaboration to help expand our research on female hemophilia carriers and establish long-overdue support systems in China;

The title for 2025 Hemophilia day is ‘Access for all: Women and girls bleed too’.

Let her be heard. Let her be diagnosed. Let her be safe.