Skin disease

By: Courtney Harrington

Unfortunately, some people suffer from a rare skin condition that causes their skin to burn extremely easy. Photo courtesy of Google images

When the weather is nice and the sun is high in the sky, people are typically drawn to the outdoors. Lounging by the pool, playing basketball and riding a bike are all every day activities that people enjoy doing outside. However, there are a few people who qualify as the exception. Unfortunately, there are people around the country who suffer from skin diseases that prevent them from enjoying themselves out in the sunlight. One of those diseases is known as erythropoietic protoporphyria (EPP). It is a rare skin condition that causes sensitivity to sunlight and different types of artificial lighting. EPP is a result of high levels of porphyrins, a type of protein that carries oxygen into the blood stream. Elevated levels of porphyrins cause a toxic reaction of the skin when it comes in contact with sunlight.

Typically, EPP appears in some people before the age of six. Some patients are dismissed, saying that they are simply hypochondriacs. However, the patients that the physicians are turning away have a rare skin disease. Symptoms of EPP are usually burning of the skin, itching and redness.

One man that suffers from EPP goes by the name of Robert Saupe. He is a 45 year old man that cannot leave his house without wearing appropriate clothes to fully cover his skin. “I don’t go outside without having a long-sleeve shirt on, a hat, a bandanna and gloves,” Saupe explained. This middle-aged man has never been able to dream about one day going on a cruise with his family or riding a motorcycle cross-country. Saupe was forced to hide.   

Because Saupe is an excavator, his job tends to be very challenging for him. With his job being outdoors, it is easier for him to suffer from heat exhaustion and pass out due to the excessive clothing. “On the hot days wearing all that – it’s exhausting,” Saupe said. With things seeming as if they would never look up, an implant known as Scenesse was invented. Scenesse is an implant that increases the amount of melanin in the human body. Having the extra melanin in one’s system provides extra protection against the ultraviolet rays given off by the sun and other forms of lighting. The drug is still very new, preventing doctors from knowing everything they need to know in order to begin prescribing such a drug. The drug last around two months, and from data collected, the drug appears to be “promising.” Before the implant was created, Scenesse was available as an injection. However, it wore off quickly.

One perk to Scenesse that doctors have seen in the past is that it is said to darken a person’s skin due to the melanin. “People are always excited when there’s a product that can induce tanning without the risk of additional UV light,” dermatologist Dr. Elma Baron stated. For once in a person’s life, they have the chance to one day be able to live again and step out into the sunlight and not have to worry about EPP controlling their every move.


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