22 Apr 2024

Awareness on haemophilia remains key in improving support and resources for those diagnosed with the condition as well as to promote early diagnosis, appropriate treatment and reduce misconceptions surrounding it.

This was said by Botswana Inherited Bleeding Disorders Association (BIBDA) chairperson, Mr Friday Phatshwane at  a press conference in Gaborone recently.

Mr Phatshwane said despite its relatively low prevalence in the country, it was important that people had a basic understanding of haemophilia so that they would be able to assist in case of emergency.

He said Batswana still did not understand haemophilia and it was not discussed as a medical condition hence the need to raise awareness and close the gap.

“Education on the condition plays a key role in empowering both the patients and the general public to better manage haemophilia and ensure that the affected can live a fulfilling life.

Education should be across all people, even the health care personnel are sometimes unaware of the haemophilia condition and never know what to do. The knowledge gap should be addressed,” he said.

He added that although there was no cure for the condition, it was important to bridge the knowledge gap hence the need for a multifaceted approach involving awareness campaigns and support networks.

A volunteer nurse at the association, Ms Dorcas Ramphaleng explained that haemophilia condition was a group of hereditary genetic disorders that impaired the body’s ability to control blood clotting, which helped to stop bleeding when a blood vessel was broken. Ms Ramphaleng said the disease was inherited and people with haemophilia did not bleed any faster than normal, but longer.

“That is because their blood does not have enough clotting factors. A haemophiliac does not bleed more intensely than a person without, but can bleed for a much longer time. Even a minor injury can result in blood loss lasting days and weeks and or even never healing completely,” she added.

She also indicated that the symptoms varied with severity and mostly, one with the disease could be spotted while young.

She said children with haemophilia may be recognised when going through their immunisation as they would bleed more than usual, in dental procedures, an accident or surgery while toddlers bled when they got injured as they learned to crawl.

“Otherwise people with the condition bleed at least once a week which may lead to being anaemic and present with bruises and swollen painful joints,” she said. She further highlighted that haemophilia presented itself more strongly on males than females.

“Females who are carriers usually have enough clotting factors from their one normal gene to prevent serious bleeding problems,” she said.

She said though there was no cure for haemophilia, the condition could be controlled.

Meanwhile, Ms Nelly Monametsi said BIBDA, a non-profit organisation established in 2019, was dedicated to advocating the needs of the bleeding disorders community in Botswana.

Ms Monametsi said the association ensured that people with bleeding disorders had access to appropriate and quality care, education and support.

She thus urged Batswana to join the association in support of  the bleeding disorder community.

She said Botswana would commemorate the World Haemophilia Day in Molepolole on May 10 and encouraged Batswana  to attend in large numbers. ENDS