Sickle Cells Disease an Economic Burden to Impoverished Families

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By Ronnie Layoo

‘‘None of my family members suffers from the disease but I took it upon myself to begin supporting sufferers and to highlight the fact that the disease isn’t receiving much attention as it should be yet numbers of infected persons continue to increase’’   the Chairman of BMK.

Over 6000 sickle cells patients have turned up for the first ever international sickle cells day which occurred at Kaunda grounds supported by the Uganda sickle cells rescue foundation. The event witnessed over 3000 patients tested and given medication and distribution of clothes.

 

One of the parents Ajok Grace talked too narrated her ordeal stating that she has over 6 children and one among them is suffering from sickle cells which is really straining the family income and resources as most time they should be in the hospital. She says that the disease started her child while he was a baby and now it has taken a toll on him which has resulted into continued body weakness and he is unable to attended education due to his continued sickness.

 

She appealed to the government to continue supporting families with sickle cells by giving them adequate information and set up more facilities which are specialized to handle patients suffering from the disease.

 

‘‘I am facing challenges in looking  after the sicklier, whereby every time I need to have money and during cold weather it’s very difficult to manage the situation and am spending over 80,000 shillings when he falls sick’’ the mother noted. Currently northern region including Gulu district is ranked among the heights areas with the prevalence of the disease which is at 17-21% unlike the national rate which is at 16%.

 

The chairman of Uganda sickle cells rescue foundation BMK and owner of Hotel African stated that he got convicted when he was in the United States and witnessed a family which went through a lot of challenges when one of their children suffered with sickle cells.

 

‘‘None of my family members suffers from the disease but I took it upon myself to begin supporting sufferers and to highlight the fact that the disease isn’t receiving much attention as it should be yet numbers of infected persons continue to increase’’   the Chairman noted.

 

We expected 1500 sickles to be given medication but unfortunately the number has increased to over 6000 patients which has made it unable to meet the demand thus justifying the need to continue supporting sickle cells patients.

 

It’s understood that sickle cell disease can be cured but the process is expensive is over 25,000 US dollars in order to carry out a bone marrow transplant but this year we as a foundation are going to support one child with bone marrow transplant.

 

The foundation was graced by Minister Hillary Onek and Member of Parliament for Lamwo, who appreciated the efforts that Uganda sickle cells foundation has been doing in order to also supplement with the government efforts. He therefore promised that through his cabinet position, he is going to lobby so that government can take up the matter seriously and begin supporting sickle cells treatment.

 

Assistant professor Dr. Captain Shadat Ssemakula, Senior Lecturer and Consultant noted that the reason why Gulu was chosen for the celebration is that according to statistics the number of infected persons is overwhelming in the regions. He says that it is common knowledge that there is a high rate of malaria, meaning there is also high number of person suffering from sickle cell disease and the region is also experiencing the same high rate of malaria.

 

Shadat notes that those with the traits should ensure that they don’t marry people with the same traits and the only way to get rid of the infections is by vaccination. It’s also very important for sufferers of sickle cells to drink a lot of water because this adds red blood cells in the body which is mostly required by sickles. Yet some of the challenges is the equipment’s needed to test for sickle cells is absent in most facilities.

 

District health educator Gulu Celestino Ojok however also noted that couples intending to get married should ensure that they test whether they are carries or not, to avoid future burdens in terms of looking after their children.

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