Inherited Diseases: Xeroderma Pigmentosum Essay

1207 words - 5 pages

The sun is something we all take for granted; a big fiery star 92,960,000 miles up in space, that is there every day, waiting to greet us. We expect it to rise and set at a certain time and don’t think much more of it. What if you couldn’t go out in the sun? What if your flesh burned in the light and retired you to the darkness of your locked up home. This is how children live who suffer from the inherited disease, Xeroderma Pigmentosum, otherwise known as XP. It’s a rare disease that causes extreme levels of sensitivity to UV light. The human skin is normally able to repair the skin damage, but children living with XP cannot. Its strikes one in one million born in the U.S. and Europe but is more commonly found in Japan, North Africa, and the Middle East. Xeroderma Pigmentosum is a difficult disease to live with and takes a toll on the life of the patient, and family members around them, but with understanding of the symptoms, adjustments to their daily life, correct treatments, and the prognosis it is manageable.
XP has a multitude of signs and symptoms to look out for, most appearing in infancy. One of the first signs is early onset freckling of the skin on the face, arms, or lips. It usually appears before the age of two. The face also has spider-like blood vessels that show through the skin, which is extremely thin. Coverage of discoloration patches, along with crusting, scaling, and oozing can also be seen (“Xeroderma Pigmentosum.” The New). The most important signs to look out for are photophobia, discomfort in light, and extreme sunburns after only short moments in the sun (Hartree). Some children even experience hearing loss and loss of previously attained abilities like walking or talking (XP). There are also difficulties with the eyes leading anywhere from inflammation, to tumors, to pigmented eyelids, or loss of lashes. There are a lot of different symptoms that change and affect the patient’s daily life, making it more difficult than someone who doesn’t suffer from XP.
Although it sounds unbearable and unrealistic, life with XP is possible. As long as the requirements of daily living are followed, children suffering from XP do alright. The most important step is blocking the sun: boarding windows, doors, etc. (“Xeroderma Pigmentosum.” The New). On top of that, sunscreen should be applied outdoors as well as indoors. Complete coverage of the skin from long opaque clothing, to special shielding suits is also a good preventative (Hartree). As seen in the photo to the right, a young boy, Alex, received the first prototype UV protection suit in 2003. The suits are currently used today and seem to help against UV light. Aside from the suits there are also night camps dedicated to those suffering from XP. Camp Dermadilo in Texas is sponsored by the American Academy of Dermatology. This camp hosts activities that go on during the evening in a UV protected building, allowing the children to interact and have fun just like any child...

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