A skin disorder that forces you to hide indoors – far, far, far away from sunlight. For a person with this disorder, any contact with the ultraviolet (UV) rays leads to several skin problems, some as extreme as skin cancer. The life expectancy of someone with this disorder is brought down to 37 years, that is if they do not have neurological problems associated with it. If they do, the number comes further down by almost a decade to 29 years.
Put all of this together for an unrealistic portrayal of not only the disease, but also a teenage romance for a brilliant movie? No, we didn’t think so either.
Harping on the theme of isolation and an echo of the idea of vampire romances, Midnight Romance hit American theatres earlier this year.
The romantic drama is the story of 17-year-old Katie Price who suffers from xeroderma pigmentosum (XP), a skin disorder that confines her to staying indoors during the day.
One google search is all it takes to remind the viewer how far the actual disease is from its portrayal in the film.
So...
What IS XP?
XP is a very rare genetic disorder which leaves the skin and tissue, specifically around the eyes, extremely sensitive to UV light. The skin on any body part exposed to the sun is also affected. In some case, the person can also develop issues related to the nervous system.
When UV rays damage the genetic material or DNA in an ordinary person’s skin, it is repaired soon after by the body. The skin of a person with XP is unable to repair itself, thereby resulting in pigmentation and other forms of visible skin damage.
Since it is a recessive inherited disorder, it means that both the parents should have the abnormal gene to pass it to their offspring. Since the gene is already rare, the chances of both parents having it become even slimmer.
This also means that someone who already has XP can pass it to their offspring only under extremely rare circumstances. It is found in one in every 10,00,000 people in the USA and Europe. In India, however, the incidence is even lower, according to the National Centre for Biotechnology Information (NCBI). The incidence is lower than not just the West, but also other Asian countries like Pakistan and Japan.
Life With XP
For someone who has XP, the first signs would appear in infancy, according to the US National Library of Medicine. These signs can range anywhere from a severe sunburn to seemingly usual tanning. More definite signs would appear by the age of two in children with the disorder.
XP also leaves the person with a higher risk of skin cancer. According to the National Library, most children with XP develop it by the age of 10 and might go ahead to develop several skin cancers throughout their lives.
People with XP are also more vulnerable to other types of cancer, including lung cancer, especially if they are smokers.
XP is an incurable condition which requires complete protection from the sun and regular medical supervision.
Vitamin D deficiency is also common with XP therefore it’s important to include supplements under medical guidance.
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