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View Full Version : Daughter was just diagnosed with JOB syndrome



Rachel
12-17-2009, 10:14 PM
Hello everyone :) My daughter was recently diagnosed with JOB syndrome. She is five years old and up until now we thought she just had really SEVERE excema. She started developing excema when she was three months old and it spread to all over her body. We went to doctor after doctor and she was always thrown on steriods of some sort and anti-itch till one dermatologist diagnosed her with JOB. Everyone with JOB has severe excema. All she has ever known is to sit and scratch till she was a bloody mess. Her clothes would stick to her body and we would have to soak them off it was that bad. Her IEG levels in her blood and out of the roof. Normal is 80-100 she is currently at 8500 and rising. We have several doctors working on the case because it so rare. A one in a million deal. I was wondering if there was anyone out there that has had excema and later found out they had JOB and what did you do about it. I know only about 250 cases have ever been reported but I am always praying to find someone that have been in a sililar situation. Thanks for you time!

Dr.Deepak
12-18-2009, 04:15 AM
Hey Rachel welcome to Dermatalk and we are very sorry to hear about your daughter being diagnosed as "JOB syndrome". Its very rare so hard to find such cases more often. we are glad several doctors are working on the case. You must have already known do's and don't in Job Syndrome as you have been fighting for several years now, like encouraging physical activities, taking prophylactics and so so. Your allergist and immunologist will suggest better if not visited already.

There are few trials going on you can check here:
http://clinicaltrials.gov/ct2/results?term=Job+Syndrome&recr=Open

Few support groups :
http://ghr.nlm.nih.gov/condition=jobsyndrome

y34963
12-18-2009, 04:18 AM
Hi Rachel,
I have never heard of JOB syndrome until now. I pray that they find some relief for your precious daughter. She is so young to be going through this, my thoughts are with your family. As someone mentioned to me yesterday, this is the season for miracles, I am hoping the doctors will find one for your daughter.

Rachel
12-18-2009, 10:50 AM
Thank you very much for the replies. She is a fighter thats for sure. I wasnt suppose to be able to get pregnant, I did. She wasnt suppose to make to term, she did so I know she will rise above this. It will just be a rough road far beyond what we have imagined I think. Thank you Deepak for links I am going to visit them right now and I will keep the post updated. Doctors called yesterday and want to do Xrays of her bones cause brittle bones is one the things to look with JOB. She just woke me saying she couldnt smell lol (Her nose is stuffy) But when she feels any discomfort, she turns right to scratching her excema. But again thank you :)