Enduring a Sun Allergy in School
When we were approached by a family and their school’s administration about helping their child achieve a near complete isolation from sunlight, it was a request we had simply never encountered before. We came to learn that this Victoria area student suffered from an extremely rare blood disorder know as Erythropoietic Protoporphyria or EPP. The title of this post refers to it as an allergy, but it is in fact something quite a bit more complicated than that, and to ensure this student’s safety and comfort, removing as much visible light and UV radiation as possible from her surrounding was of paramount importance.
Below we are sharing some of the information we rounded up on EPP while we were researching this unusual condition. We also look at all of the surprising ways that UV light can be reflected and the extreme measures we had to take to make a school inhabitable by a youngster with this condition.
Erythropoietic protoporphyria (EPP) is a rare genetic blood disorder which causes an absolute intolerance to light. Avoiding sunlight is the most common form of prevention, but we wanted to help give a Victoria area child a chance to go to school and have as normal a childhood as possible for a person with their condition.
What is EPP?
Erythropoietic protoporphyria (EPP) is a rare genetic blood disorder which causes an absolute intolerance to light. EPP is caused by a deficiency of an enzyme (ferrochelatase) which leads to build up of chemical called protoporphyrin IX (PPIX – right) in the body, mostly in the skin and liver.
The problem with a buildup of protoporphryrin is that it is “phototoxic” in skin: when exposed to light (particularly blue light) the protoporphyrin IX in skin reacts with varying intensity which can cause excruciating pain. This reaction can be caused by sunlight exposure, but also certain types of artificial lights and laptop screens, as well as reflective light off water, snow or concrete. Despite the reaction going on underneath the skin, there are often no immediate visible signs on the skin.
Unfortunately, there is no effective treatment for EPP. Rather, individuals with EPP must avoid sunlight and even reflected light, often staying indoors for the majority of their life.
Reducing A Student’s Symptoms
A community coming together
Since the most common measure taken to prevent or reduce EPP reactions is to stay completely out of sunlight, it would seem that there is very little you can do to help a child suffering with this condition. But, with a co-ordinated effort between all of the people involved in this student’s life, there was a possibility that they could still do all of the things that normal students do with minimal risk to their health and safety.
Over the years, we worked in conjunction with the administration of this student’s middle-school and then high-school to map out all of the areas that the student uses for their various activities throughout the day. Every classroom, washroom, hallway, and gathering space that they would use during a normal day would need to be retrofitted with window films that could block out more than 99% of UV light to make the rooms light-safe. We installed window films in all of these areas, helping to create an oasis where the student could have a normal school experience without having to worry about the side effects of their rare condition. Interestingly, UV light is reflected from areas you wouldn’t suspect. Florescent lightbulbs, the tubes commonly used in offices and schools, give off ultraviolet light in amounts that are too dangerous for a person suffering from EPP. This meant that all lights required UV blocking sleeves to go along with the window films covering all interior and exterior windows and skylights. After installation was complete, we used UV light meters to measure the UV output to ensure that it was at safe levels for a student’s full-day of learning.
By protecting their home, vehicle, and school, this special young student had the opportunity to play, learn, and travel with their family and friends while minimizing the risk of sun exposure.
EPP resources on the web