KAMPALA – At only 5 months old, Odi Philp Pius, a son to Mr. Etokyu Richard and Mrs Wataka Rose from Mbale started living a very painful life with Sickle Cell Disease, the most common genetic disease.
Philp was born with sickle cell that he got from his parents who are both carriers.
Rose says since their son was 5 months, the hospital became their second home until February 15, 2022, when MagnusMedi Uganda, a medical tourism company saw them off to India for bone marrow transplant which was successful.
“This sickness started when he was five months old and as parents, we had no idea of what was happening with the child because first, we had never had a case of sickle cell in our families,” said very excited Rose on a celebration event in Kireka upon their arrival back from India on Saturday, May 21.
“It was very painful seeing our baby having transfusion every after week. We are in hospital every time, he started getting infections and even relatives started saying it was witchcraft. We resorted to prayers but still no improvement,” she added.
Rose says they discovered the disease when their son was seven months when they carried out an investigation and realized were both carriers.
She said that whenever it was too cold he could get pain because his blood would not move and still hot weather was too bad for him still since he would get swelling. “So our baby lived that painful life.”
She says they were advised by a one Dr. Mugabi Jamil to try bone marrow transplant since it was the only cure but still they were hopeless since the procedure needed over UGX200m, which money they could not afford.
“I had stopped working. Covid-19 came and my husband had also to stop working because he works at a school. Life was becoming difficult!”
Rose narrates that the doctor encouraged them to try a bone marrow transplant and so they resorted to fundraising in October 2021 before they were connected to Judith Sheena Komuhangi Kyamutetera – country representative, MagnusMedi Uganda who they say became their saviour.
“She told us they can sponsor our boy’s treatment in India and all we needed was to put in an application. She told us Magnus would help us get a hospital and we were only to look for money for feeding and accommodation.”
“We took off on February 15 and the operation was successful. The hospital is very good, they have all the facilities, from the nurses to doctors, the medicine. We were also lucky that our firstborn, Etokyu Tomas was 100% match to donate to brother.”
Mrs. Kyamutetera said that it is always encouraging to save people’s lives who have almost lost hopes.
She revealed that the hopeless couple reached out to them through a gentleman called Eugine generally looking for a car wash fundraising.
“I told them there was an offer that we had with one of our partner hospitals, Aster hospital in Kochi. Initially, we had identified another patient who was supposed to go but the patient later changed his mind. I met the parents and explained to them and we started on the process.”
She revealed that MagnusMedi Uganda is a company that will help you to connect to hospitals out of Uganda for different treatments at relatively cheap rates.
“We have a partnership with more than 50 hospitals in India and we have special rates to favor our clients. We get you services that are faster because we believe the fact that you are a foreigner, the shorter you stay out of the country, the cheaper it becomes for you.”
Mrs. Kyamutetera said that much as they are expanding their services to include Turkey, Dubai, and South Africa, they still find India cheaper and friendly yet with the best services.
You can reach out to Mrs. Kyamutetera via +256 702 415 939/+256 772 415 939
Statistics
Study shows that 20 percent of Ugandans have the sickle cell genetic defect
Sickle cell disease is a genetic disease that affects red blood cells. Due to their sickle cell-like formation, the red blood cells cannot efficiently transport oxygen into the somatic cells.
In Uganda, 20,000 babies are born each year with a genetic defect. Without treatment, children die before the age of 5.
People with sickle cell disease often suffer from many complications, such as anaemia, life-threatening bacterial infections, severe physical pain, strokes and general organ failure. Symptoms vary from person to person. The disease significantly affects sufferers’ education, work and psychosocial development.
The main drug for the treatment of sickle cell disease is not on the list of the most important drugs. The medication is often not available. Many Ugandans cannot afford the high costs of treatment.
Accordingly, stigma and myths about sickle cell disease are widespread in Uganda. Misconceptions are widespread not only among the population but also among health workers. Stigmatisation isolates sickle-cell patients and their families from society. In many cases, women with sick children are abandoned by their husbands, which complicates their financial situation and, by extension, access to treatment.
Blood tests are the most effective way to monitor the disease and reduce related complications.
