What It’s Like to Live with BBS: Deidre’s Journey

 “Hi, my name is Deidre Vansyoc, and I have BBS (Bardet-Biedl Syndrome).  What is BBS, you ask? Well, it is a genetic disorder that is a very rare disease. When I was nine years old, I was diagnosed with this disease, and back in the 90s there wasn’t much research on this disease, but there is now. So please bear with me as I take you through this journey of my life with BBS, and I do hope you learn something about this. I know that I sure have in the last several years.

On May 21st, 1983, I was born in Denver, Colorado at 4:45am with 12 toes and 11 fingers, and at the age of two, they took off my extra toes. When I was three years old, I finally started talking and ended up in speech therapy until I was thirteen years old. When I was five years old, my family and I had found that I had night blindness after I had gone trick or treating with my little brother, who was a year old at the time, and we were living in Mountain Home, Idaho.

As I started school and was going through life at a young age my family and I had noticed and had seen that my grades weren’t that good and when I became an adult I was tested for a learning disability, which is part of BBS. I may not learn like others but I do just fine and if I don’t understand, I will let you know.

The other parts of BBS are deterioration of bones, hearing, liver, kidneys, heart, and [cognitive disabilities]. In 1997-1998, at the age of fourteen, I had back surgery to have a metal rod put in my back only because the bottom half of my back was already gone and the top part of my spine was tied in a knot, so my doctor had told my parents that if they hadn’t put the rod in my back, I would either be in a wheelchair at the age of sixteen or a vegetable state at the age of eighteen.

From the age of one until now, I have had tubes in my ears three times and two surgeries on my left ear to fix the bones in my ear. Just recently I was diagnosed with liver disease but my kidneys are fine. I also have a lot of tummy issues that are unknown, but I am working on it. There is also the obesity issue which I have dealt with all my life, but that is BBS life. I feel very lucky that I do not have the heart, lungs, or kidney issues with this disease. As a person with BBS, it is unknown when I will go blind, but I feel very blessed to have had [my vision] this long.

I realize this is a lot to take in, but this is my journey with BBS. I believe that even though I have BBS, I feel I can do anything that everyone else can do as a normal person, such as go to work, raise a daughter, and volunteer in my church nursery.

I hope you enjoyed my journey and hope this helps you understand BBS a little more.”

— Deidre Vansyoc