Time to focus on sickle cell tragedy in Uganda

With up to 15,000 babies dying annually due to sickle cells, Uganda gets a chance to highlight the struggle it faces by hosting the 6^th International sickle cell conference scheduled next month.

Uganda hosts the 6^th International sickle cell conference scheduled on 25^th to 27^th May at Hotel Africana.  World olicy makers, clinicians, scientists, researchers and others arrive in Kampala soon, opening an opportunity to raise the awareness of sickle cell disease that is largely neglected in Sub Saharan Africa.

Sickle cell disease isn’t a priority in medical facilities in Uganda.15, 000 babies die from the disease annually in Uganda. 80% die under the age of 5years due to negligence of the disease.

In February 2014, Sickle cell laboratory opened. 49 0ut 0f 112 districts have sickle cell trait/carrier at 15%. The Northern region has the highest burden rates at 21% seconded by Central and Eastern. Also 14 districts contain 47% of sickle disease that include Kampala, Gulu, Lira, Jinja, Tororo, Luwero, Iganga, Oyam, Apac, Buikwe among others.

Charles Kiyaga, National Sickle Cell Coordinator at Ministry of Health encouraged the public to undertake premarital screening before marriage. “This helps to avoid unknown consequences or regrets especially when the children to be born will suffer from pain or die.”

Prof. Christopher Ndugwa, health expert elaborated on the disease. “Sickle cell is a genetic abnormality inherited from both parents. The cells block blood from flowing through veins during circulation. Some symptoms include pain, chronic anemia, pneumonia, enlargement of spleen.”

Ndugwa said that the only solution to the disease is to identify it early and do regular follow ups.

Ashiraf Tusubira working with Uganda Sickle Cell Rescue Foundation, a victim of sickle cell testified towards the social discrimination and stigma experienced by one suffering from sickle cell disease. “We are sickly and that makes it hard for people to accept and associate with us; sometimes marriages are broken and clans disown any relations with the disease which has contributed to victims keeping silent about their status.”

“I started activism against sickle cell disease after I had lost my roommate to the disease at Kawempe Muslim Secondary School. We didn’t know about his status, so he encountered an acute crisis one morning and the school delayed calling the parents to take him for treatment which resulted into his death,” Tusubira continued. “I have achieved a master degree at 25years and even gotten married to a normal wife. I encourage people suffering from the disease to be open about their status, undergo medication and work towards their dreams.”

The Ministry of Health has implemented baby screening in 274 health facilities in the country that has yielded to 23,000 babies screened last year. We plan to advocate for screening by engaging stakeholder that include religious leaders, media and work with a multi sectoral system as well.