Robert Kabu* is a 24-year-old student from Makerere University in Kampala, Uganda. 10 years ago, he got infected by schistosomiasis in the Victoria Lake, where he used to go and play with his schoolmates. After many years of fear and pain, Robert is now cured and has decided to get involved in the fight against schistosomiasis, liver cirrhosis and varices in the region. Through his experience, he is in a better position to raise awareness about the damaging effect of schistosomiasis on the liver and the importance of prevention.
Hello Robert, please could you explain to us how you got infected and how you felt at that time?
I got schistosomiasis back between 2008 and 2011 when I was studying in a school near Lake Victoria, where I used to go for recreation and games. I’d been infected for more than 6 years without any specific signs and symptoms, until I started vomiting blood. This is when doctors found out that I had chronic schistosomiasis and was bleeding due to oesophageal varices! This meant that I had reached the last, and most damaging, stage of the disease. Before that, I used to get upsetting stomach-aches, which I thought were ulcers, and had an enlarged spleen, which was nothing relevant for the health workers I used to consult. All these years I always felt normal and healthy, although I had constant complications with my stomach, which I think I got used to until the fateful day I got unconscious from vomiting blood.
What kind of care and treatment did you receive?
I was given immediate first aid at Nakasero Hospital in Uganda to reduce my bleeding and tests started immediately to find out the cause of the bleeding. Upon discovery it was oesophageal varices, I had to undergo endoscopy band litigation 3 times. The doctor kept me strong. He was always there to attend to me in times of emergency when I would bleed to unconsciousness. As for my family and friends, they gave me financial support and stayed close to me during this trying period, as well as advising me on what lifestyle to adopt.
What were the main difficulties you had to overcome in terms of healthcare?
There were so many difficulties I had to overcome, the most frustrating one being failure to find out exactly what the problem is since most of the tests could not be done in Uganda. Difficulties like lack of drugs to stop bleeding in hospitals and pharmacies, lack of kits for banding and also the fact that there’s only one specialist in this field is scary too.
According to your own experience, what are the biggest stakes doctors and patients have to deal with?
Schistosomiasis is a silent killer that is all over the country, since the fresh water bodies and swamps as well as dams are all over the country. However due to its affiliation with the poorest communities on top of being illiterate, many people actually don’t understand it as they think its just worms; some even believe its sorcery which is absurd. According to my experience I think doctors must work to raise awareness about the disease first, as many don’t know how deadly it can be, and also train more health workers on how to handle chronic schistosomiasis aside from participating in Mass Drug Administration only. Vector control has also a key role to play through sanitation drives and provision of safe water to avoid people relying on infested water bodies like lakes and wetlands. Much more advocacy and awareness are also needed about this disease, as it’s the 2nd most deadly killer after malaria in Uganda.
Would you like to add something? To emphasize on some specific points on Bilharzia?
Bilharzia is not only for the poor communities as many people believe so. Anybody can get Bilharzia. It is a silent killer with little or unnoticed signs and symptoms until it gets chronic, very serious and irreversible. We must take on a severe fight against bilharzia.*not his real name.