By Henry Mugenyi
Have you ever heard of Haemophilia?
Neither had Nimwa Muwesa until her son Ethan nearly bled to death after his fourth head surgery. This was when a friend suggested that Muwesa should consider testing her son for this very rare blood disorder.
Muwesa had been in and out of hospital with her son since he was born three years ago.
Prior to that last surgery, Muwesa had seen Ethan through three head surgeries to clear blood clots. Then she took her friend’s advice and to her shock discovered that Ethan suffers from haemophilia.
Muwesa had herself tested too and learned she was a carrier.
However, with the source of Ethan’s ill health diagnosed, a treatment regimen called factor 8 was available. Today, Ethan is a jolly, lively child who lives in Mukono with his mother and they are looking forward to a bright future.
But not many Ugandans are aware of this condition which has at least 3000 registered cases in the country, according to Doctor Deogratius Munube.
Deborah Nakyejjwe, a mother of five from Matugga, is dealing with this condition too. The single 37-year-old mother recently learned that four of her children suffer from haemophilia.
The Busikiri resident had been in and out of Mulago national referral hospital countless times trying to ascertain why her children never seemed to be well for long. Most of their visits often saw them being referred to the Sickle Cells unit where they would be given painkillers.
This continued happening until her third child suffered a fall from his bed and bled so severely a doctor had an idea to test him for the condition. This is how they came to discover that four of her five children have the rare blood disorder condition.
Since Muwesa and Nakyejjwe discovered the conditions of their children, they have joined the Haemophilia Foundation Uganda. The foundation strives to ease access to healthcare for persons with the condition in Uganda.
Doctors at Mulago hospital believe that there are thousands more people in the country possibly suffering from this condition yet to be diagnosed.
Doctor Deogratius Munube a haematologist from Mulago hospital, points out symptoms that might suggest a child or one suffers from the condition.
Symptoms of the condition
Painful, prolonged headache
Sleepiness or lethargy
Sudden weakness or clumsiness
Convulsions or seizures