Beza Tilahoun is 18 years old, and currently resides in Addis Ababa, Ethiopia. Two years ago, Beza began to experience unusual symptoms, “I started to get short of breath. At night, I started to have a hard time breathing. There were nights I just sat up all night.” Beza fainted at her home in Gondar, and her symptoms became progressively worse from then on. She eventually had to drop out of school because the three-hour walk was too strenuous. When her symptoms worsened, her brother took her to Black Lion Hospital in the city of Bahar Dar. She was then referred to Children’s Cardiac Center of Ethiopia in Addis Ababa, where they discovered she had Rheumatic Heart Disease (RHD). Beza received surgery in September of 2017 and has been recovering well since.
What Beza’s Story Teaches Us
RHD is preventable and caused by the progression of untreated strep throat. Strep throat can be treated by penicillin when diagnosed in time. In Beza’s case, the disease had progressed significantly and the only intervention that would serve as a long-term cure was life-long medication and cardiac surgery to repair her damaged heart valves.
When Beza’s family first arrived in Addis Ababa, “they told us for her to go abroad to get surgery would cost 600,000 birr ($26,086) which was too much for our rural family. I considered selling my house. But even that would not cover it.” The family was extremely worried, and it was not clear how Beza would get the care she needed.
Beza had to travel great distances to receive an accurate diagnosis, but she also had to wait months for the surgery to occur. “I saw a doctor three months ago who said he would do his best to help me … and that’s why I am here, waiting for my surgery. This is the day I have been waiting for.” While Beza expresses relief that she will be have surgery, the time she had to wait for surgery put an additional strain on her heart. Waiting long periods of time for treatment not only worsens the condition, but also increases the duration of time to recover, leading to prolonged financial and psychosocial burden on a person living with RHD. Access to cardiac surgery must be readily available to patients living in rural areas, like Beza, and not just in capital cities.
When asked to provide a message for others living with RHD, Beza says, “Please take care of it as soon as possible. Don’t wait too long. The earlier the better.” Increased access to diagnosis, treatment and cardiac surgery across all levels of the health system will ensure that young people living with RHD like Beza are able to access to life-saving treatment that they need as soon as possible.