What a clot I got: the reality of bleeding disorders in SA

While bleeding disorders, which are sometimes life threatening, are common in South African males, doctors say the condition has often been misdiagnosed or overlooked in females.

Ahead of Word Haemophilia Day on Thursday, the rare inherited bleeding disorder, affecting about 1 in 5,000 male births in South Africa, has come under the spotlight.

It's a lifelong condition where the blood doesn't clot properly due to a deficiency of clotting factors, primarily factor VIII (Haemophilia A) or factor IX (Haemophilia B). Haemophilia A is more common, with about 1 in 10,000 males affected.

While males are most commonly affected, females can also be, especially if they inherit a carrier gene and their X-chromosome is inactive in the production of factor VIII or IX.

The South African Haemophilia Foundation (SAHF) is advocating for the condition to be recognised in females through its “Access for all: women and girls bleed too” theme for World Haemophilia Day this year.

The foundation wants to shed light on the often-overlooked experiences of women and girls with bleeding disorders who continue to face delayed diagnoses, misdiagnoses and limited access to appropriate care.

Specialists have warned heavy menstrual bleeding, frequent nosebleeds, easy bruising and prolonged bleeding after procedures are all red flags — but few general practitioners dig deeper.

“The time has come for women and girls to be recognised as people with bleeding disorders,” said SAHF chair Clerment Sefojane.

“This recognition will help expedite their access to the care they need. We must re-educate our communities, including healthcare professionals and patient networks, to move beyond referring to women as ‘just carriers’. They are patients too, and their symptoms are real. We must start using the right terms — this reintroduction of language is pivotal to shifting the system.”

The need for accurate diagnosis and treatment is even more urgent in under-resourced and rural areas, where access is already strained for many people living with bleeding disorders.

Dr Yasmin Goga, who heads SAHF’s medical, advisory and scientific committee, believes equitable access “is not just a principle — it’s a necessity”.

If we fail to provide adequate care to all, especially the most vulnerable, we’re doing a great disservice to our community. The majority of our undiagnosed and undertreated patients are in rural parts of South Africa. We must work harder to close these gaps
— Dr Yasmin Goga, head of SAHF medical, advisory and scientific committee

“If we fail to provide adequate care to all, especially the most vulnerable, we’re doing a great disservice to our community. The majority of our undiagnosed and undertreated patients are in rural parts of South Africa. We must work harder to close these gaps.”

Paediatric haematologists Dr Nicolene Moonsamy and Dr Keshnie Moodley recently cast light on the blood disorder at Lenmed eThekwini hospital and Heart Centre’s awareness event attended by patients, their families and specialists.

They said while Haemophilia A and B are more common in males, bleeding disorders affect women too — but they’re often missed.

“We’re seeing young women, even in their twenties, come to us with extreme fatigue and iron deficiency anaemia,” said Moodley.

“They’re often given supplements and told to move on. But many have undiagnosed bleeding disorders.”

Heavy menstrual bleeding, frequent nosebleeds, easy bruising and prolonged bleeding after procedures are all red flags — but few general practitioners dig deeper.

“You’d be shocked how many women have been suffering in silence. There’s still a bias that only men get bleeding disorders, and that needs to change.”

Sandi Tenza, the mother of three-year-old Sanda, who has haemophilia, said the condition makes routine activities such as running, jumping and even brushing against furniture potentially dangerous as it could trigger internal bleeding.

Haemophilia A is caused by the lack of a specific protein needed for blood to clot.

Without it, even small injuries can lead to prolonged or spontaneous bleeding, especially into joints such as knees or elbows — causing pain, immobility and, if left untreated, permanent damage.

While initial treatment for Sanda included regular infusions of factor VIII, the burden on the family soon became overwhelming.

“From a lifestyle point of view, it just wasn’t feasible. We researched and asked our doctor to motivate for a newer drug — Hemlibra. Thankfully, we were approved. That medication changed everything for us,” said Tenza.

According to doctors the condition often demands constant care, daily medication and frequent hospital visits.

“It’s not just the patient who suffers. It’s the whole family. Parents lose workdays, siblings miss out, and the emotional toll is heavy. These kids can’t always play sport, go to school normally, or even walk without risk,” said Moodley.

She said treatment is expensive and medication isn’t always available.

Tenza said despite its risks, haemophilia is often misunderstood or dismissed entirely especially in African communities where genetics are rarely part of public health conversations.

“Some people in our communities associate unexplained illness or bruising with witchcraft. There’s just not enough awareness about genetic disorders like this.”

That lack of understanding can delay diagnosis — sometimes with life-altering consequences.

Signs of haemophilia and bleeding disorders include: