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Posted by: The Sumaira Foundation in NMO, Patient, Voices of NMO
My name is Rita Ddungu Sembuya and I am from Kampala, Uganda. I am a patient living with neuromyelitis optica (NMO), and I was very pleased to receive an introduction to The Sumaira Foundation. I am grateful to learn that the Foundation was founded by someone who also suffers from NMO.
I do not know exactly how long I have had NMO, but the disease became apparent in May 2022, when I partially lost vision in both eyes. I began to recover after my first treatment, which involved a series of 20 infusions (500 mg each). The doctors told me these infusions were intended to help restore my eyesight. I also took steroids, and afterward I was discharged from St. Francis Hospital, Nsambya (in Kampala).
In July 2022, I began to feel severe weakness in my back and I could no longer walk. I was re-admitted to St. Francis Hospital, Nsambya, and this time the doctors told me I was experiencing an attack affecting my spinal cord, which explained my inability to move and walk. They discharged me and I returned home to recover. A few months later, I was readmitted to the hospital, still unable to walk. My limbs felt extremely heavy, as though they were carrying great weight. The doctor explained that I was losing nerve function from my feet up to my chest, and I had numbness in some parts of my body.
The doctors recommended that I be treated with a drug called Rituximab. However, the treatment was extremely expensive in private care – about 3 million Uganda Shillings (roughly USD $900) for the course.
I could not afford this, so after receiving just one injection, I asked to go home. The plan was to receive the injection every two weeks, but I was unable to continue with it.
Currently, I am receiving treatment at Mulago National Referral Hospital, where I have been able to receive Rituximab at no cost. However, I still experience significant weakness throughout my body. My chest, arms, hands, fingers, and lower limbs are all very stiff. I can only sit and move around using a wheelchair. This condition began on December 17, 2024, and now nearly five months later, I still cannot walk or stand.
I was introduced to The Sumaira Foundation by a friend, Mrs. Sandra Dill, who lives in Australia. Sandra and I share information and participate in activities related to infertility. I am very happy to be connected and to be using the resources provided by the Foundation. I have even shared this information with my treating physician. I continue to listen to patient stories and expert presentations; they are helping me learn a great deal about NMO.
I will link them to the information and resources from The Sumaira Foundation. I hope to serve as an ambassador for NMO in my country, Uganda, connecting medical professionals and patient support groups as we move forward in fighting this disease.
Many people say they have never heard of NMO, and even some doctors admit they are only just learning about it. The few specialists I have encountered on my journey – those who have helped me survive these past three years – will be very happy to have access to the information and research provided by The Sumaira Foundation.
