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First in a series. When people think about my life with Bardet-Biedl syndrome, what might come to mind first is my vision loss, but one of the hardest challenges I have faced has been severe obsessive-compulsive disorder (OCD), which is often associated with the condition. As a…

Accepting my blindness was a long, hard-fought process. My blindness is caused by Bardet-Biedl syndrome, a rare genetic condition. For the longest time, I did not want to accept my blindness. However, once I finally came to terms with my reality, I felt a sense of freedom. For years,…

When I think about how Bardet-Biedl syndrome, an inherited multisystemic disorder, has affected my life, the first thing that comes to mind is how much my vision has been affected. My journey with vision loss began very early in life. I was around 2 years old the first time…

From birth, my story was marked by uncertainty. My kidneys were so enlarged that doctors didn’t expect me to live. At first, they believed I had autosomal recessive polycystic kidney disease, but then I survived. As I grew, doctors continued to keep an eye on me and closely monitored my…