Columns

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…

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. When my son Hollis began treatment for acquired hypothalamic obesity (aHO), our family felt hopeful. After two…

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…

Looking back, I realize that my son Hollis’ acquired hypothalamic obesity (aHO) didn’t begin with weight gain. The signs had been there for years, I just didn’t know what I was seeing. In October 2019, Hollis underwent brain surgery to remove a craniopharyngioma, a rare type of noncancerous…

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…

When people look at my son, Hollis, they often notice his weight before anything else. What they don’t see is the permanent damage left by his craniopharyngioma, a type of brain tumor. They don’t know that he’s undergone brain surgery and radiation treatments, or that he takes medications daily…

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…