Rare skin disease, sun exposure hurts.?!


Question: Rare skin disease, sun exposure hurts!.!?
I read an article about a year or so ago over on cnn!.com about a little girl who had a very rare disease, she was allergic to the sun and other bright lights!. Going into the sun or other harsh lights could literally kill her!. It said less then like a hundred people in the world have this!.
I remember they shortened it to CEP(at least i think thats what it was ><) but i cannot remember what exactly it was called!.
Ive heard of other cases like this, and no im not talking about freaks who want to think they are vampires and whatnot and fake it, this is real!.
I wanted to do a report on it for collage so if anyone knows what im talking about or can point me to a site that can, it would be much appreciated!.
Thanks in advance!.Www@Answer-Health@Com


Answers:
I found this on http://newsstore!.smh!.com!.au/apps/preview!.!.!.

EPP and CEP are very similar:


EPP is a rare genetic disease found in people with fair skin!. It is characterised
by severe light-sensitivity or "phototoxicity" of the skin resulting in intolerable
pain, swelling, and scarring, usually of the hands and face, so the areas
exposed to UV and light!. The pain suffered by an EPP patient when their skin
is exposed to light is comparable to that caused by scalding boiling water on
the skin!. EPP patients are often forced to remain indoors, severely affected in
their inability to lead a normal life or as put in medical terms: a condition
severely affecting their quality of life!. Our photo-protective drug CUV1647
increases melanin density (biological pigmentation) in the skin through a
controlled release resorbable implant thus shielding the skin from the
damaging effects of the sun!. In essence, through our drug CUV1647 we're
able to switch on nature's own pigment without exposing the skin to the sun
and its damaging effects!. We administer CUV1647 to test in our trials whether
the drug can assist sufferers of this rare disease!.

Also known as Guenther's disease, the causes of CEP are similar to EPP!. CEP
is an extremely rare disease found in people with fair skin with patients
experiencing extreme photosensitivity resulting in blistering, severe scarring
and increase hair growth!. Infection of damaged skin and phototoxic damage
may result in the loss of fingers and facial features!. The Committee for Orphan
Medicinal Products (COMP) has included this disease as it is thought that any
treatment with CUV1647 would be potentially useful to prevent severe skin
blistering and wound formation!. In fact, we are conducting a trial in CEP
already!. Www@Answer-Health@Com

Some people have a similar but far less severe allergy where they cannot enjoy the summer months!. They are unable to let the sun get on their skin and have to keep covered up or they get a condition called Solar Urticaria!. It is like a heat rash where the skin becomes raised with bumps and is painfully sore and itchy!.

Certain medicines can cause this reation in people, such as gastric drugs!.

There is a lasor treatment therapy, called Photo Dynamic Therapy (PDT), which results in a similar and life threatening reaction to the sun as you have mentioned in sufferers of CEP!. But is it exceptionally well tollerated form of Cancer Treatment, (although highly expensive), and the solar allergy diminishes after about 6 months or so!.

Hope this helps your research!.Www@Answer-Health@Com





The consumer health information on answer-health.com is for informational purposes only and is not a substitute for medical advice or treatment for any medical conditions.
The answer content post by the user, if contains the copyright content please contact us, we will immediately remove it.
Copyright © 2007-2011 answer-health.com -   Terms of Use -   Contact us

Health Categories