Sandi Tenza with her son Sanda who was diagnosed with Haemophilia A, a rare genetic bleeding disorder. alongside Dr Keshnie Moodley who has been treating him at the Lenmed Ethekwini Hospital and Heart Centre in Durban
Image: Supplied.
What do you do when your baby boy bruises just from crawling?
When a gentle bump leads to swelling, pain - or worse, internal bleeding?
For Sandi Tenza, those were the terrifying signs something was deeply wrong with her infant son,
Sanda. At just six months old, was diagnosed with Haemophilia A, a rare genetic bleeding disorder.
Now three years old, Sanda lives with a condition that makes the ordinary seem dangerous — where running, jumping, or even brushing against furniture could trigger internal bleeding.
“I knew something wasn’t right,” Tenza recalls.
“As a mom of two, I could tell the bruising wasn’t normal. We saw a paediatrician, and after some tests, we were told it was a factor VIII deficiency.”
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 like knees or elbows - causing pain, immobility, and if left untreated, permanent damage.
This week, Tenza joined other parents and specialists at Lenmed Ethekwini Hospital and Heart Centre to mark World Haemophilia Day, a global event held annually on April 17.
While the official date falls next week, paediatric haematologists Dr Nicolene Moonsamy and Dr Keshnie Moodley hosted the hospital’s awareness event early to ensure more patients could attend - many of whom travel from rural areas.
The message of the day was clear: this condition may be rare, but its impact is far-reaching — and often overlooked.
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,” Tenza said.
“We researched and asked our doctor to motivate for a newer drug - Hemlibra. Thankfully, we were approved. That medication changed everything for us.”
Lenmed Ethekwini Hospital and Heart Centre Staff at the weekend's event to raise awareness around haemophilia.
Image: Supplied
Dr Moodley and Dr Moonsamy, who treat haemophiliac children across KwaZulu-Natal, say this scenario is not unusual. The condition often demands constant care, daily medication, and frequent hospital visits. And it affects far more than just the child.
“It’s not just the patient who suffers,” Dr Moodley said.
“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.”
And then there’s the fight for access.
“Treatments are expensive,” Dr Moodley said bluntly. “
The drugs aren’t always available. Medical aid battles are common. Some families are forced to go without the best care - simply because they can’t afford it.”
Despite its risks, haemophilia is often misunderstood - or even dismissed entirely. Especially in African communities, said Tenza, where genetics are rarely part of public health conversations.
“Some people in our communities associate unexplained illness or bruising with witchcraft,” she said.
“There’s just not enough awareness about genetic disorders like this.”
That lack of understanding can delay diagnosis - sometimes with life-altering consequences.
“We’ve seen children with repeated joint bleeds who are left with permanent deformities,” said Dr Moonsamy.
“One of our patients can’t straighten his arm because he wasn’t diagnosed in time. Early treatment could have saved that joint.”
While Haemophilia A and B are more common in males, both doctors say 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 Dr 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,” she added. “There’s still a bias that only men get bleeding disorders, and that needs to change.”
At the heart of the event was connection - between doctors, families, and children living with conditions most people will never hear about.
“We know each family’s journey here,” said Dr Moodley. “Every one of them has faced different challenges. This day was about saying: we see you, you matter, and we’re walking this journey with you.”
Tenza agrees. Her advice to other families?
“Pray. Research. And advocate for your child. Doctors might not always have the full picture, so trust your gut and ask questions. There are options — you just have to fight for them
“Both doctors stress that early diagnosis, access to modern treatments, and awareness among families and frontline healthcare workers are the most powerful tools in managing haemophilia.
“It’s a lifelong condition,” Dr Moonsamy said. “But with the right care and support, these kids can live full, beautiful lives.”
Niresh Bechan, the CEO of Lenmed Ethekwini Hospital and Heart Centre said that initiatives such as these speak to the heart of Lenmed’s Vision of building healthier and prosperous communities.
“At Lenmed we are committed to spreading awareness around medical matters, after all prevention is better than cure.
“Our knowledgable staff go over and beyond to offer the best possible service to our patients,” he added.
What to Look Out For: Signs of Haemophilia and Bleeding Disorders
If you or a loved one has experienced these symptoms, consult a haematologist for clotting factor tests.
IOL Health