Living with extreme chronic skin cancer risk

aimee milota's story

 
Video narrated by Michele Milota -
Executive Director, XP Family Support Group

video-icon-tag.png Learn more from the dermatologist's perspective

When my daughter Aimee was born, I noticed there was something different about her skin. It was very dry and sensitive, much more so than a typical baby, and eventually our pediatrician recommended we see a dermatologist.

Aimee was diagnosed with xeroderma pigmentosum, or XP—a rare genetic disorder where individuals are missing DNA that protects and repairs their skin from ultraviolet light damage. It makes any kind of sun exposure very dangerous—just a few minutes of sun exposure, even while using sunscreen, can cause third degree burns and skin cancer. There’s also a risk for neurological deterioration.

In the beginning, it was incredibly difficult to avoid exposing Aimee to any sunlight, even indirectly. I couldn’t bring Aimee to the park during the day or have our curtains open, and we had to have special UV protective film installed in our vehicles. Anytime she is outside, even for a minute, she needs to be completely covered from head to toe. Despite all our precautions, Aimee has had to have 26 skin cancers removed.

Upon her diagnosis, Aimee’s dermatologist worked to become very knowledgeable about XP. After he retired two years ago, we started seeing one of his colleagues, Dr. Sima Torabian. Dr. Torabian works closely with us to monitor Aimee’s skin and quickly remove any skin cancers. Skin cancer in patients with XP looks completely different than other patients, so it’s been a collaborative learning experience for all of us.

As Aimee’s grown, she has done so much to help educate people about XP. She doesn’t let it stop her and she is an active teenager. She is helping other kids realize that their XP or other skin condition won’t stop them.

The dermatologist's perspective

Aimee is a great kid—really bright and very aware of her skin and her spots. It makes my job easier because she truly knows what’s at stake. It’s important for dermatologists to be aware of XP and the high-level of sun protection needed, and to build close and trusting relationships with patients and their families.

– Sima Torabian, MD
Kaiser Permanente