Life in darkness
Painfully teased with the name “Vampire Girl,” Piper Rainen, 21, of Keystone, Colo., is allergic to ultraviolet light. She has a condition called basal cell carcinoma nevus syndrome, also known as Gorlin’s syndrome. Piper found out she has Gorlin’s syndrome at age 13 after a dentist found and removed several cysts in her jaw. Since then, she has had seven surgeries to remove cancerous skin cells from around her eyes, the bridge of her nose, around her cheeks, on her head and in her left armpit.
Piper’s skin is so sensitive that she feels a burning pain when UV rays hit her. A protective film on the windows of the family’s homes and vehicles block out ultraviolet rays and give Piper safety. She is never outside for more than seconds during daylight so her skin does not develop cancer. Her dad pulls the SUV close to the entrance, and Piper runs inside wearing protective clothing.
Piper’s mom, Kathy Rainen, tests the UV levels in a Mexican restaurant near their home in Keystone, Colo., while Piper waits in the car. The UV reading was low enough to be safe for Piper, and she was able to go inside for dinner.
The family takes the meter everywhere they go. It is the type used by art museums to keep the atmosphere archival.
A necessity for her, Piper tries on sunglasses with 100 percent UV protection at Wal-Mart. She bought three pairs because she frequently loses them.
A golf cart with windows treated to block UV rays enables Piper to travel around campus at Baker University in Kansas.
Piper’s boyfriend, Evan Crable, 24, talks to her through the glass as she travels with a friend in between classes.
Piper plays around with her parents Kathy and Mike. The Rainen family’s strong bond has helped them get through difficult times when Piper has been suicidal.
Piper says she lost most of her friends when she was diagnosed with Gorlin’s syndrome. Up late each night by herself, she plays on her computer surfing the Internet.
Evan is Piper’s second boyfriend and first kiss. They have been dating for six weeks. The couple spends time alone in his room in the Zeta Chi fraternity house on a Friday night while a large group of students party downstairs in the house.
Evan, left, and Piper shoot pool in the basement of the Zeta Chi fraternity house.
Nighttime is when Piper comes alive. Only after dark is Piper able to enjoy life around windows without protective clothing, fear and stares from unkind strangers. Piper said she loves nighttime, the only time she feels truly free.