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Chronic granulomatous disease

Posted by @taytesmommy in About Kids & Teens, Jun 29, 2012

My son has been recently diagnosed with CGD, are there anyone else with a child with CGD? I just wanted more info from a parent with a child suffering from the same condition.


Posted by @taytesmommy, Jun 29, 2012

This disease happens in one in a million so I'm hoping someone has some personal info for us!!


Posted by @cscnursegina, Jun 29, 2012

I was diagnosed with a granulomanous liver disease... upon more investigation I also had a granuloma in the breast and in the lung nodules. I was diagnosed with sarcoidosis. Has that been considered as a diagnosis? I'm currently on remacaide now, not only for this, but also I have crohn's disease. These autoimmune disoders tend to run together.


Posted by @powderchick2, Jul 1, 2012

Hi. We have a 2 1/2 year old son who was diagnosed with CGD when he was 8 months. I and My husband would be happy to talk with you. We saw this post b/c we have a google Alert for Chronic Granulomatous Disease. You can email me and then I can share our phone #. Hang in there. Jennifer


Posted by @markpico, Jul 1, 2012

HI, I;m a 43 yr old w/CGD, I'd be happy to speak to you. Please feel free to email me and we can exchange phone numbers if you would like to. Mark,


Posted by @salt4earth, Jun 21, 2013

Hi Mark, My 5 yr old has been repeatedly sick with pneumonia since 1 yr old. No doctors ever take it seriously. I have searched for what is wrong. Just now a radiologist suggested from xray film that he could have cgd and he has the profile, I even have the carrier's profile, but dr's still don't want to test him. What kind of dr. should I see to test him. The immunologist in Fort Worth say they don't do it and the Infectious disease dr's said they don't but they will see him (and take me money). Do you have any suggestions? I am desperate. I just want him tested. I am going today to plead with my pediatrician to order the test, but don't know what will happen. I am willing to drive anywhere to have a real doctor check him out. So if you have any suggestions that could help me, I would appreciate it. Thanks so much.


Posted by @markpico, Aug 7, 2013

Hi April, sorry for the slow response. My CGD dr would like to know the area that you live in TX, I'm guessing he is going to see if he can refer you to a dr.


Posted by @bensmom, Jul 4, 2013

My now eleven year old son was diagnosed at about 15 months old. Ben has had a few surgeries to remove bacteria, he takes antibiotics every day, and he has a wonderful life. He plays soccer and attends public school. We have been very blessed. My email address is I would be more than happy to talk with you or help you with any questions you may have. Ben's is x linked. We have 3 other children that did not get the gene. Thank God! Please contact me if you need or want to talk. I can give you some resources that may be helpful as well. God bless you and your little angel. We are in NC and go to Duke when needed and for regular check ups.

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