What are your symptoms

[Jifizap53]

Was amazed to find this forum as I've never met another person with UP!  My adult son has had UP almost his whole life.  His only problem (other than the spots themselves) is that he cannot expose his torso to the sun.  He has an extreme painful itchy internal reaction and ends up in the ER.  Does anyone else have this problem?  He doesn't go to the doctor, and I wonder if he should be getting checked for some complication that can arise from this.  When he was first diagnosed at 3 months of age, I was told that if the spots did not go away during adolesence he could get them on his organs, and I believe that is what causes his reaction to the son - that spots on his organs become inflamed and itchy and painful.

[ohcalcutagirl]

hi, how old is your son because u said something difficult to understand;
  "When he was first diagnosed at 3 months of age, I was told that if the spots did not go away during adolesence he could get them on his organs, and I believe that is what causes his reaction to the son - that spots on his organs become inflamed and itchy and painful. "

so is this right, he is now older and has the spots show up on his genitals? (teen or older yet )
. . what meds has he been on
. . what did dr say ever about vitamin D or being in sunlight
. . have steroids been used

GOOD LUCK

[Jifizap53]

Sorry for my misspelling "his reaction to the son" when I meant "his reaction to the sun".  As I said, my son is an adult now; he was diagnosed at 3 months of age.  He has never been on any meds or steroids, and the doctor never mentioned vitamin d or sunlight.