Xeroderma Pigmentosum

X.P. presents many challenges for those who are affected by the disease, as it does for those who care about their health. X.P. being very rare, there are lots of things still unknown about the way to protection. Hail from necessity we resort to generalizations like: “Avoid any source that sends out UV radiations!”.

We are conscious that this fact is easier saying it than doing it. What shall we avoid? How can we beware of something that we can avoid? It’s a simple question. The responses are not so simple. We will try to answer these questions now, but we assure you that while progression of the researches, the responses will improve.

What shall we avoid? UV radiations are on the top of the list. Although, those who suffer by X.P. manifest photo-sensitivity, so they must avoid the sources that send out a powerful light and any source that it’ s possible to contain UV radiations. UV radiations have the highest potential in causing harm, and the sun is the most important and significant UV source that can cause harm to DNA, that leads to the appearing of cancer.

UV represents the part of electromagnetic spectrum, with a variable wavelength, even beyond the violet light, till the wavelengths called X-rays. As the wavelength is shorter, the effect on DNA is higher. For the patients of X.P. these effects on DNA are very important.

As the wavelengths are lower they get closer to the visible light and they represent the UV amount send out by the sun. The UVB amount send out by the sun is lower than the UVA amount, but the effects on DNA are higher. UVC radiations send out by the sun can’t get on Earth because of the protection of the ozone layer. Although, patients of X.P. can be affected by the lowest level of UV radiation, even.

While no authority can tell us for sure what quantity of UV is unfailing (positive) we have to resort to terms less precise. We begin by proclaiming that the amount of UV has to be zero. This value can be acquired in any house by covering the windows and using only low sources of light. It has been proved that a short exposure at low levels of the sunlight can cause severe burnts right away in the case of a X.P. patient.

The absence of the capacity of redressing the DNA is one of the characteristics of X.P. The effect of exposure at UV is cumulative. Thus the dose is very important. A higher exposure at UV for a shorter time, combined with the exposure at the living, will always produce a higher dose for the whole day. It doesn’t matter how short is the time of exposure.

Although, all of the decisions that result in track of a longer exposure must be taken in …. terms. How important is the need of traveling or being in other building where the light isn’t that sure as it is at home? How efficacious is the combination between sunscreen and protective cloths? Children affected by X.P. can and will attend to school, will go to medical meetings and will participate to other important activities. The traveling routes, the hours of the day, using sunscreen, covering the entire body with protective cloths are all important factors. But even the best textiles or eye protective products have a scale of protection.

When we considerate the irreversible harms of DNA, have we be solicitous for the possibility of an accidental exposure, when the patients` glove or hood can be taken off in a normal game or in other activity? But, how about the textiles? Or the dose of UV accumulated, caused by the long exposures? When concerns have been brought to us by the parents of the children who use these products, we brought them too to your attention by our web site.

The true problems have shown facing this problem. All printed standards are about the solar protection for all of us, not for special causes of X.P. We recommend those interested in the effect of any product to contact the distributor or the manufacturer.

The purpose of X.P. Society is to educate and to affirm it by providing all we have been learned from the researches of the families of the patients to help them making individual and intelligent choices. We stand up for maximum protection against UV radiation.