Columns

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…

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…