Rare skin disease, sun exposure hurts.?

Question

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.

Answer 1

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.

Answer 2

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 &quot;phototoxicity&quot; 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&#039;re

      able  to  switch  on  nature&#039;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&#039;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.