The Truth About Xeroderma Pigmentosum, The Rare Disease Featured in “Midnight Sun”

According to a story from Teen Vogue, Midnight Sun, a new film starring Bella Thorne, is slated for release on March 22nd, 2018, is a romantic drama whose central character, 17-year-old Katie Price (played by Thorne), suffers from xeroderma pigmentosum (XR), a genetic skin condition in which the body’s ability to repair damage from UV light is deficient. Bella expressed her desire to increase awareness about the condition in a tweet posted on March 5th.

The disease requires for an affected person to minimize sun exposure, and in extreme cases, all exposure to sunlight should be avoided. Kids with the disease are often referred to as “Moon children.” The vulnerability to UV damage means that a people with xeroderma pigmentosum are highly susceptible to cancer, which is a frequent killer in people with the condition. The disease is six times more common in people of Japanese ancestry; symptoms include severe sunburn when exposed to even a small amount of sunlight, heavy freckling, skin cancer and solar keratoses (rough skin patches), eye sensitivity to the sun, blistering, scaly and dry skin, and spider veins. There is no real cure for xeroderma pigmentosum, but people with the disease must avoid sun exposure with the use of sunscreen and clothing. To learn more about this condition, click here.

Portrayal of rare diseases and disabilities has always been a subject of controversy, and a common trope is for a person with a rare condition to be “saved” by an unaffected person. Patient advocates often criticize such films for not using a disabled actors or for a portrayal of rare disease that makes the sufferer appear helpless. People with XR often live short lives, with only about 40% of patients surviving beyond age 20, mainly due to high cancer rates.

The unique characteristics of XR has made it a popular subject in entertainment. While Midnight Sun might be the latest depiction, it is far from the first. Xeroderma pigmentosum has been featured in a variety of novels, movies, and television shows. A 2012 documentary “Sun Kissed” highlights the problems of XR on the Navajo Indian Reservation. Hopefully, the plight of people with this condition while begin to improve soon.

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