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No advertising or solicitation is permitted on the forums. We would like to point out that the purpose of our forums is for the exchange of relevant experiences and the friendly support to other people who share our immunodeficiencies. The forums do not aim to provide detailed medical advice, as we are not able to verify the integrity of the views made through the forums. Members of National Member Organisations (NMO) who wish to ask medical questions may do so via their NMO via telephone or e-mail and they will be helped personally and privately (for contact possibilities see: About IPOPI/Member Orgs).
General Discussion : IPOPI Forums
Please add to our discussion forum. (Please do not use the forum for advertising.)
32 y/o m with Job's/Hyper IgE in Arizona, US
Posted by: dje (---.ded.ameritech.net)
Date: March 01, 2007 10:22PM Hi,
I've been meaning to do this for ages and finally got around to it. I am a 32 y/o male, and was diagnosed with Job's Syndrome at 6 months of age, at University Medical Center in Tucson. I had all of the normal issues when I was younger; skin infections, boils, pneumonia, ear infections, tooth retention, hyper-extensive joints, etc. I currently wear bilateral hearing aids, due to extensive hearing loss due to the many infections. I also have upper and lower dentures, as my teeth just died and started falling out when I was about 20. I also never lost a tooth naturally, and had the common "3rd row" of teeth. I guess I am relatively lucky, as my case of Job's Syndrome does not appear to be nearly as severe as many of those I have read about here. I essentially live a very normal life and have the ability to do most anything I desire, which is wonderful. I have extremely bad asthma and very depleted lung capacity due to the many infections and surgeries, but it's not anything I can't live with. I can definitely empathize with the stories of doctors not knowing anything about the disease. I have also been very lucky to have come into contact with some very good doctors, and to have been diagnosed at such a young age which was undoubtedly a benefit to me. If any of you would like to get in touch with me, for any reason, feel free to do so. You can email me at danielNOSPAMeames@hotmail.com (remove the NOSPAM to reach me). Good luck, -dan Re: 32 y/o m with Job's/Hyper IgE in Arizona, US
Posted by: Carole (---.server.ntli.net)
Date: April 03, 2007 08:59PM Hi Dan,
I've just read your message and want to say hello. I also have Job's and was diagnosed at 22 (I'm 44 now). A lot of the symptoms you list I have also suffered from and still do. I have depleted lung capacity but, like you, currently I am still managing to get on with things. Do you have one lung which is more affected than the other? What sort of treatment do you receive and are you part of any trials for it? Kind regards, Carole Re: 32 y/o m with Job's/Hyper IgE in Arizona, US
Posted by: d_zeas (---.dhcp.insightbb.com)
Date: February 10, 2008 10:36PM Dan and Carole
My brother in law at age 3, was just diagnosed, and that has been a long road. Do you have any advice in getting good treatment since doctors know so little? What have you found useful in obtaining information and proper treatment? D Sorry, only registered users may post in this forum.
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