Yesterday marked the 11th annual World Sicklecell day. The day was commemorated at the Ministry of Health headquaters with presence of the PS. Dr. Atwiine Diana, officials from 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. Alot is being done to improve sicklecell services.
The inside story of 3 parents testifying the experience of having child(ren) or living with sickle cell;
- A mother of 3 lost one of her worriors 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 loose lives.
- Executive Director Petroleum, Philip Wabulya of BOU also narrated the story of his son who went through bone marrow transplant. Six months after his son's birth, the young boy developed pain and was to be flown to the USA. Prior to that, he visited Dr. Tumwiine who told them that the boy was a sickler but he didnt believe because they didnt have that in the family history. He decided to go and retest else where but unfortunately the results were the same. They travelled and came back to Uganda where he knew that his son would be in safe hands of his doctor. After 17years, an indian doctor approached him and said that they actually do 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 incase of any attack. Immediately after his exams, the boy decided that the transplant should be done. To cut the story short, they travelled to India for the transplant with the father being the donor. Then came back to Uganda after 6months and their life style had to change as they reached an extent of not having friends and relatives visit home due to hygiene issues. Obviously people never understood why his home was out of bound but it was for his son's safety. He was so greatful 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 off their savings. These worriors need money and support.
- Executive Director of Sickle cell Association Uganda, Mrs. Ruth Nankanja Mukiibi cameup and also narrated her story but this time round, she is the sickler. From childhood, she was been managed by Professor Ndugwa till now at the age of 44years. Her experience is quite different being the sickler, her late father never wanted her to get married with the worry of a man mishandling his daughter. He was willing to take her through until she attained PHD 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, it is the obligation of young couples to 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. Lets care and support these worriors.
The PS Dr. Atwiine Diana concluded by saying that sicklecell 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 till adulthood. She thanked him for the legacy built.
She also said it is the first in the sub Sahara to have such an intensive research in sickle cell. She appreciated the efforts of the partners, cultural leaders and all other supports for the struggle.