Clare Beezhold
Staff Writer
Sophomore Emma Crain does not let her rare genetic condition, Xeroderma pigmentosum (XP), define her.
Her condition, diagnosed at the age of two, causes extraordinary sensitivity to sunlight resulting in the development of skin cancer at a very early age. XP is caused by a defective repair of the damage done to DNA through ultraviolet radiation (UV) light. An XP patient is unable to repair UV-induced damage.
“There are a lot of different types of XP,” Crain said. “Mine doesn’t affect anything other than my skin but XP can affect your brain and can cause brain damage leading to mental issues.”
XP makes it very difficult to be out in the sun and can cause both physical and neurological damage. Physical effects include freckles and severe sun burns. Neurological effects include intellectual disabilities, developmental delays, hearing loss and eye problems.
“I just get freckles, but other people can burn and they can actually feel [the effect of the sun] but I can’t feel it,” Crain said. “If I were to go outside, I would not know the damage it was causing, but some people can get a really bad sunburn.”
The main health concern for people with XP is their vulnerability to skin cancer. There are four different types of skin cancer: melanoma, basal cell carcinoma, squamous cell carcinoma and actinic keratosis, the worst being melanoma. Crain has not had melanoma, but she has had the other three types of skin cancer. Crain has had 10 diagnosed cases of skin cancer and countless small cases that were treated with a topical ointment.
“Basically my skin cells don’t repair sun damage, so any damage I get is forever,” Crain said. “It builds up and eventually leads to skin cancer, and I can’t really prevent it other than [by] not going outside and covering myself.”
Every day comes with challenges for Crain, including her wardrobe. Due to XP, she has to wear gloves and a special hat when she is outdoors. She also has to wear clothing that covers all areas of skin exposed to the sun. Her car windows and hat are covered with a special German-made clear vinyl material that protect her from the sun.
“I have to make sure the doors are closed if I am right near them or if the window is sunny I have no protection,” Crain said. “If I go outside for long periods of time I can [get] hot or uncomfortable so I have to plan ahead for most things.”
Crain has spent her entire school career with XP and it presents many challenges for her. Some issues include fire drills, which negatively affect Crain because of the long periods of time spent in the sun.
“Sometimes [science] labs are outside so it is hard for me to hear and to talk because people cannot hear me outside because of my hat,” Crain said. “It is just hard for me to do things outside, [but] it is usually manageable because I eat lunch inside and people are accommodating.”
However, XP does not prevent Crain from participating in sports or other hobbies. She has been an ice skater for over 10 years and has chosen to pursue indoor extracurriculars because of her condition.
“I started skating really young because it was inside so I could do it easily,” Crain said. “My parents didn’t want me to do something outside because it would be hard. Soccer, for example, I probably could not do.”
After spending a majority of her life with XP, Crain found a support group with three other girls her age from different places across the country. Over the years, they bonded over the commonalities of their illness and decided to start an Instagram account called @moonrisexp to educate others on XP, Crain said.
“We wanted to just make an instagram to share our condition and explain to people what [XP] is,” Crain said. “It is really cool because all of our friends from different parts of the US follow us so they can learn more about XP and the effects of it.”
Although XP has brought many challenges for Crain, she has made the best of her situation and is always excited to educate others on XP, she said. When Crain was younger, her condition affected her self-esteem. Now however, she is confident in herself and does not let her condition affect who she is, Crain said.
“We are the same as everybody else, we just have a condition, we are normal,” Crain said. “We can’t do anything about our condition so we just live life with what we are given and we make the most of it.”
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