This blog is dedicated to all the Porphyria patients worldwide.
The American Porphyria Foundation will provide updates and information here, as well as on the main site - http://porphyriafoundation.org
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EPP Have you ever wondered why you have been sunburnt on a cloudy day?
Have you ever wondered why you have been sunburnt on a cloudy day?
The total dose of UV radiation reaching the earth’s surface and hence, the potential damage to human skin and tissues, varies, depending on many factors.
The sun’s elevation in the sky depends on the time of the day and year. The shorter the distance that photons (making up the total of UV radiation) need to travel though the earth's atmosphere, the greater the intensity of UV radiation. The altitude of a location also effects UV radiation levels as the higher a location is above sea level, the shorter the distance UV radiation travels.
The thinning of the ozone layer located above Antarctica has had a considerable impact on the ability of the atmosphere to absorb UVB, a significant contributor to the increased incidence of skin cancer and other damage to human tissues which has been observed in populations bordering the ozone hole.
Clouds act on UV primarily by scattering radiation which can both reduce and enhance the UV radiation levels depending on the type of cloud cover.
Some clouds absorb infrared radiation and as a result of the diminished heat sensation, people are given a false sense of security and often change their behaviour on cloudy days, unaware that they are exposing themselves to this potential danger.
UV radiation is also reflected from surfaces such as sand, snow and water. These surfaces can increase the UV radiation at ground level and increase the amount of skin damage incurred from UV radiation exposure.
So, when all these factors are considered, it is important to recognise that the net potential UV risk is a result of these associated variables, depending an Individual’s circumstances. The only sure way to significantly reduce the risk of skin damage is with vigilant protection from UV radiation and light, known as photoprotection.
Q & A WITH PORPHYRIA EXPERT, DR. BRUCE
WANG, UCSF The APF asked our Facebook friends for their top questions they
would ask a porphyria expert.
The following questions were submitted
to Dr. Wang for his responses ...
Q. Does EPP give us bad teeth? Also, do people with EPP
get stomach pains or is that with the other porphyias?
A. The porphyrin that accumulates in EPP patients is protoporphyrin
IX, which does not cause discoloration to teeth or abdominal pain.
The type of porphyria that leads to discolored teeth is Congenital
Erythropoietic Protoporphyria. The porphyrias that lead to episodic
abdominal pain attacks are the acute hepatic porphyrias.
Q. I have EPP and I have a severe reaction on my hands
and lips. Do I seek urgent care? Also, what can you even do
when you burn your lips?
A. The acute reactions to sunlight in EPP can be very severe and,
unfortunately, there are not many effective options to treat the
symptoms. Nonsteroidal anti-inflammatory drugs (NSAIDS such as