Mastocytosis Community
What are your symptoms
About This Community:

This patient support community is for discussions relating to Mastocytosis.

Font Size:
A
A
A
Background:
Blank
Blank
Blank
Blank Blank

What are your symptoms

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.
Related Discussions
2 Comments Post a Comment
Blank
Avatar_m_tn
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
Blank
Avatar_f_tn
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.
Blank
Post a Comment
To
Blank
Weight Tracker
Weight Tracker
Start Tracking Now
Mastocytosis Community Resources
RSS Expert Activity
242532_tn?1269553979
Blank
Emotional Eating Control: How to St...
Aug 28 by Roger Gould, M.D.Blank
233488_tn?1310696703
Blank
New Cannabis Article from NORTH Mag...
Jul 20 by John C Hagan III, MD, FACS, FAAOBlank
242532_tn?1269553979
Blank
3 Reasons Why You are Still Binge E...
Jul 14 by Roger Gould, M.D.Blank