The story of Genevieve
When I was six years old, my mother noticed a rash on my neck and immediately took me to a dermatologist. After extensive testing and a biopsy, I was diagnosed with Darier’s Disease, a rare genetic skin disorder. As a result, I was referred to Dr. Amy Paller, Chief of Pediatric Dermatology at Children’s Hospital for treatment. Dr. Paller would prescribe a variety of topical creams, bleach baths, and experimental drugs to alleviate my condition. However, this relentless routine became a constant battle between my mom and me because it often caused burning sensations, extreme dryness, and a strong dislike for the routine as a whole. At each six-month check-up, Dr. Paller would evaluate the effects of the previous treatments, and we would start afresh with a new approach. Darier’s Disease affects 97% of my body, including my scalp, ears, stomach, back, face, and neck to varying degrees of severity.
For the past 13 years, I have consistently been on Accutane, and in addition, tried other medications. Unfortunately, Accutane comes with its fair share of side effects including sun sensitivity, constant skin and lip dryness, and an obligatory monthly pregnancy test known as the iPLEDGE Program. Along with these side effects, I have experienced other challenges like not being comfortable in tank tops, v-necks, or strapless clothing because of my rash. This was extremely tough as a teenager and college student. Shopping, in particular, is one of my least favorite activities because I am always conscious if the clothing will cover my rash. Throughout all of this, I am always grateful for my loving family and amazing friends for continually supporting me.
Six years ago, my parents helped form a dedicated team at Northwestern Hospital to research Darier’s Disease and my specific cells. We believe we’re closer to a treatment—and ultimately a cure. I’m excited for what’s ahead and know that together, we can be Darier’s strong!