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WORLD SICKLE CELL DAY at Ministry of Health HQ in Kampala

Yesterday marked the 11th annual World Sicklecell day. The day was commemorated at the Ministry of Health headquarters with the presence of the PS. Dr. Atwiine Diana, officials from the Busoga Kingdom like the Minister of Health, Owek. Dr. Balyeku Andrew, Buganda kingdom representative, Minister of Health Owek Dr. Ben Mukwaya, Prof. Ndugwa Christopher, Prof. Russell Ware, and the CPHL family.  Schools present at the function were Buganda Road P/S, Our Lady Luwero, Garfield Nursery, and Primary Sch, All Saints Christian Sch, Zainab baby & Junior school and Students from IUIU.  

Uganda had only one sickle cell clinic that was at Mulago by then but now, the clinics are over 20 within the country. A lot is being done to improve sickle cell services.

The inside story of 3 parents testifying the experience of having a child(ren) or living with sickle cell;

  1. A mother of 3 lost one of her warriors aged 29 to kidney failure two years ago. It wasn't easy raising sicklers but with the help of her mother who is a nurse and the father to the children, all went smoothly as they managed the situations. She urged medical personnel to always do checkups on body organs of patients complaining of continuous pains so as not to lose lives. 
  2. Executive Director Petroleum, Philip Wabulya of BOU also narrated the story of his son who went through a bone marrow transplant. Six months after his son's birth, the young boy developed pain and was to be flown to the USA. Before that, he visited Dr. Tumwiine who told them that the boy was a sickler but he didn't believe because they didn't have that in the family history. He decided to go and retest elsewhere but unfortunately, the results were the same. They traveled and came back to Uganda where he knew that his son would be in the safe hands of his doctor. After 17years, an Indian doctor approached him and said that they actually do a bone marrow transplant. By then, the son was in Senior four almost sitting for his exams and then got ill to the extent that he was always escorted by an ambulance for his exams in case of any attack. Immediately after his exams, the boy decided that the transplant should be done. To cut the story short, they traveled to India for the transplant with the father being the donor. Then came back to Uganda after 6months and their lifestyle had to change as they reached the extent of not having friends and relatives visit home due to hygiene issues. People never understood why his home was out of bound but it was for his son's safety. He was so grateful for the support from the bank otherwise he wouldn't have managed to raise all that money.  He stated that sickle cell is an epidemic that robs parents of their savings. These warriors need money and support.  
  3. Executive Director of Sickle cell Association Uganda, Mrs. Ruth Nankanja Mukiibi came up and also narrated her story but this time around, she is the sickler. From childhood, she has been managed by Professor Ndugwa until now at the age of 44years. Her experience is quite different being the sickler, her late father never wanted her to get married to the worry of a man mishandling his daughter. He was willing to take her through until she attained a Ph.D. so as not to go through any hardships in life but she decided to divert from her father's great plans and got married. She is married with 3 children who only have the traits since her husband is AA. Her message was that there should be an allocation for Sickle cell disease in the budget. 

From these testimonies, young couples should test for sickle cell disease before marriage. Those that have the traits or are sicklers should marry those that are sickle cell-free to stop the circle. Let's care and support these warriors.

The PS Dr. Atwiine Diana concluded by saying that sickle cell is one of the major causes of infant mortality in our country. So as we tackle and try to reduce the burden, we must ensure early diagnosis

and treatment. Sickle cell is not witchcraft and it can be alleviated. She appreciated Professor Ndugwa for being a hero. He has been there for children until adulthood. She thanked him for the legacy built. 

She also said it is the first in the sub-Sahara to have such intensive research in sickle cell. She appreciated the efforts of the partners, cultural leaders and all other supports for the struggle.