Without SPS awareness in the medical community in Kenya, a lack of access to reliable insurance, and her own reluctance early on to undergo multiple tests, Joy Lwangu’s SPS went undiagnosed for almost 15 years. As a result, she lost her voice and her ability to walk. Now she’s fighting the clock to fundraise for a treatment that she hopes will change her life.
Joy writes, “It is simply a disease that remains invisible to the world around you for years and finally gets diagnosed when your degeneration is too drastic to be ignored. If the same standard was applied to many other diseases? Diabetes, high blood pressure? How many people would be dropping dead daily? Death rates should not be what gets research funding and leads to better training in medical school. Quality of EVERY LIFE on earth is key.”