Kat’s Kourage - a Column by Kathryn Blalock

Before I underwent treatment, living with Bardet-Biedl syndrome and obsessive-compulsive disorder (OCD) often felt like a double whammy. While vision loss affected how I navigated the world around me, OCD influenced how I experienced it. Blindness often exacerbated my OCD because I couldn’t always see what was around…

Grief can show up in many different ways. It can come from losing a loved one or a beloved pet, or grieving a part of your life that is slowly changing. For me, grief has been part of living with progressive vision loss. I grieve parts of my independence, experiences…

It’d been well over a decade since I last attended a Bardet-Biedl syndrome (BBS) conference. Back then, I was a young girl who wasn’t ready to accept my diagnosis or disability. Fast-forward all these years, and I returned ready to embrace who I am and in a position to use…

For a long time, I never imagined that my story could help someone else. I spent years feeling embarrassed by my blindness, ashamed of my obsessive-compulsive disorder (OCD), and hesitant to talk about the challenges of living with Bardet-Biedl syndrome (BBS). Instead of allowing people to see those parts…

Note: This column describes the author’s own experiences with Imcivree (setmelanotide). Not everyone will have the same response to treatment. Consult your doctor before starting or stopping a therapy. One symptom of Bardet-Biedl syndrome (BBS) is hyperphagia — an intense, hard-to-control hunger. It is a symptom I struggled with…

The highlight of my week begins when I put on my helmet and wait for my turn to mount a horse. Riding brings me joy and peace, but it has also helped me become more confident, independent, and determined. For me, riding truly is therapy. I have loved horses since…

Last in a series. Read part one.  After years of living inside the bubble of obsessive-compulsive disorder (OCD), I finally made the decision to seek treatment. I knew I needed help, but finding that help became an uphill battle. I applied to numerous treatment facilities, but I was turned…

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…