Features

What�s behind that nosebleed?

Progression: A diagram showing haemophilia's transmission in a family
 
Progression: A diagram showing haemophilia's transmission in a family

Maybe you walked around in the sun for too long, or you have a passing allergy.  No big deal right? Friday Phatshwane knows better.

As the founder and chairman of the Botswana Haemophilia Society, Phatshwane knows that while seemingly innocuous, a persistent nosebleed could be a harbinger for haemophilia, a relatively unknown condition in Botswana. If your joints start hurting and your feet swell, it may not be gout. Coupled with persistent nosebleeds, and easy bruising, you could have haemophilia.

This week, Phatshwane and the 12-year-old organisation shared more details of the obscure condition with Batswana as the country commemorated World Haemophilia Day. 

Phatshwane has a close relative who has lived with the condition for 20 years and is passionate about haemophilia. Haemophilia is a rare bleeding disorder in which the blood does not clot normally. If you have haemophilia, you may bleed for longer than others after an injury.

You also may bleed internally, especially in your knees, ankles, and elbows and this bleeding could damage your organs and tissues and even be life threatening.

Signs of internal bleeding may include, blood in the urine or stools; as well as large bruises, which are as result of bleeding in the large muscles of the body.

For Phatshwane, World Haemophilia Day is an opportunity to shine a light on a condition that is mostly ignored, misunderstood or shrouded in mystery. “This is a good effort with the ultimate goal of ensuring better diagnosis and access to care for those with this condition,” he said. “A significant amount of care, support and advocacy is done through extended families, which are in many forms such as medical teams, friends, colleagues and immediate relatives. “Today, these people come together and share their experiences and also come up with ways to improve their loved one’s lives.”

According to Phatshwane, haemophilia is usually inherited. The disorder is passed from parents to children through genes, where males are mostly patients and females the carriers.  “In Botswana we have registered 55 haemophilia cases and all patients are males.  One is a 14-year-old minor and these are just figures for patients in and around Gaborone,” he said. “Males mostly suffer from this disorder and are more likely to have symptoms such as nose bleeding or internal bleeding where the blood clots in one’s joints.”

According to the society chair, people born with haemophilia have little or no clotting factors in their blood, a protein needed for normal blood clotting. Platelets play a major role in blood clotting and thus a person has to have protein that works with them to help their blood clot during an injury.

When blood vessels are injured, clotting factors help platelets stick together to plug cuts and breaks on the vessels and stop bleeding. “If someone has this problem, it is advisable that they seek medical attention- fast.   There is an injection that one can be given to correct this matter by adding a missing factor in the blood so that it can clot,” Phatshwane said.

About one in 10,000 people are born with the condition, whose most common type is called haemophilia A. Haemophilia A occurs mostly in people who have a family history of the bleeding disorder and is the result of a recessive inherited trait. Haemophilia B is caused by spontaneous genetic mutation. 

According to Phatshwane, rarely is haemophilia acquired, meaning developed during one’s lifetime and not from birth. However, this can happen if one’s body forms antibodies that attack the clotting factors in the bloodstream.

According to the society chairperson, most medical personnel in Botswana have a hard time distinguishing haemophilia from other diseases such as cancer.  “This is because haemophilia is not included in the local medical syllabus,” he said. “In most cases medical practitioners misdiagnose haemophilia for cancer and you will find out that people have had limbs amputated or other body parts cut off while they could have been saved.

“I believe that many cases of mortality in male children in this country are caused by haemophilia. “In many cases we have investigated, there are signs that children have the disorder.” The Botswana Haemophilia Society’s efforts to bridge the medical gap through training has been futile, as Phatshwane revealed that five of the six officers they trained left the country for greener pastures. “We are now left with one nurse who specialises in this disorder. However, we are determined to train more medical practitioners in haemophilia so that they save lives,” he said.

The society’s perennial challenge is lack of resources and Phatshwane has appealed to government to include haemophilia in the medical training syllabus, in order to stem the rise of the condition.