We’re excited to introduce you to the always interesting and insightful Genevieve Lee. We hope you’ll enjoy our conversation with Genevieve below.

Genevieve, thanks for taking the time to share your stories with us today Was there a moment in your career that meaningfully altered your trajectory? If so, we’d love to hear the backstory.

In February 2024, I decided to take action and create Decoding Darier’s. I have had a Rare Skin Disease for 20 years and the community of people is very small. I found it reached a point that to connect with those that have Darier’s disease I had to help create the community. There are many pages for patients with Rare Disease but I wanted to create a page that would allows for patients to share their story and help uplift them. By creating Decoding Dariers it has been an opportunity for people to see how everyone’s condition is so different and at the same time we experience similarities. There truly is no one way to treat Darier’s and Decoding Dariers has helped show light to that. When connecting with people through Decoding Darier’s it has been upliftiing to feel the connection with those who experience the same condition as I do and have faced similar challenges throughout our lives.

Genevieve, before we move on to more of these sorts of questions, can you take some time to bring our readers up to speed on you and what you do?

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 assemble a dedicated team at Northwestern Hospital in Chicago to focus on researching Darier’s Disease and understanding my specific cells. We are patient and believe that we are closer to discovering a treatment, and ultimately a cure. I am filled with excitement for the opportunities that lie ahead and believe that together, we can be Darier’s strong!

Let’s talk about resilience next – do you have a story you can share with us?

Throughout my experience with Darier’s Disease there have been several added health challenges with this disease. One continuous challenge I experience is infections and having to then take antibiotics to treat it. As I’ve gotten older I have learned the signs of when an infection will start and try to get ahead of treating it. It is something that I have learned how to treat and take care of time after time again. There have been trips that I have been on and haven’t had an antibiotic with me or access to get one so it has required extra patience to work through the infection and healing.

What’s been the most effective strategy for growing your clientele?

When it comes to our strategy for growing our social media following, we’ve focused on creating a supportive and engaged community dedicated to raising awareness for the Darier’s Disease community. Consistency on social media has been key, but we’ve also prioritized initiatives that encourage deeper involvement. For example, we launched the Decoding Darier’s group chat, providing a safe space where individuals impacted by Darier’s Disease can connect and support one another. Additionally, in October, we organized our Walk for Darier’s, which featured an in-person walk in Chicago and a virtual walk on social media, allowing participants from around the world to join in raising awareness.

Contact Info:

• Instagram: https://www.instagram.com/decodingdariers/
• Facebook: https://www.facebook.com/profile.php?id=61556095749244