This is a community supported site that provides a place for family, friends, and patients with Chronic Granulomatous Disease to share information, stories, and ideas.

The Chicken or the Egg

I was recently (December) diagnosed with CGD.  It has only taken 57 years for them to find out what is wrong with me.  The various CGD symptoms mask themselves as to many other things; i.e., allergies, childhood ailments, etc.  Today I had a bone scan and my GYN has determined it is severe osteoporosis.  Can this bone loss be from CGD?  I mentioned my newly diagnosed CGD to her; but was met with a blank look. Since doctors don't know what CGD is they are unable to relate it to whatever the current ailment is.  How can you really know  the actual cause of any medical problem you ha

Submitted by Vickie on Wed, 2007-01-03 13:23. read more | Vickie's blog | 8 comments

Leeds CGDer treated to fire station visit

Leeds Today Evening Post reports that three year old CGDer Aiden Conlin from Leeds was treated to a surprise visit to the local fire station courtesy of the Make a Dream charity. As one might expect, Aiden was particular enthralled with the flashing lights, sirens, and the opportunity to turn a fire hose on his family.

Leeds Today quotes Aiden's mother Kelly, "It's amazing. He absolutely loves fire engines and is always talking about them. We couldn't have done this on our own."

Aiden was diagnosed with CGD when he was six months old and is currently being treated at St. James Hospital while he waits for a bone marrow donor for transplant.

Submitted by Tracy on Fri, 2006-12-15 11:54. login or register to post comments

IDF 2007 National Conference

Meet IDF in St. Louis
2007 National Conference

Meet IDF in St. Louis
 
The 2007 IDF National Conference, which will be held June 28-30, 2007, offers three days of learning, discussing and sharing for everyone living with primary immune deficiency diseases.  World-renowned immunologists will share their time and expertise with you.  You will learn about scientific advancements in the diagnosis and treatment of the diseases and gain skills needed to manage your health care.  And of course you will benefit from the opportunity to meet other families and talk with the faculty.

Submitted by watergirl6 on Wed, 2006-12-06 10:58. read more | watergirl6's blog | login or register to post comments

Joyous False Alarms

Last Thursday Clayton spiked a high temperature accompanied with some light coughing, reminding us of his symptoms back in June '05 when he was in the hospital for 5 weeks with a severe bacterial lung infection.  It's enough to make me hysterical, even now.  And I'm trying to more calm, but so far, no luck.  I hauled it to the doctor's office, fought my way in, demanded a chest x-ray, and hauled it to radiology with my two hungry and annoyed children.

And the diagnosis is (da-da-da-daaaaa...)
A COLD!
Submitted by Claytons Mommy on Mon, 2006-12-04 21:28. read more | Claytons Mommy's blog | 4 comments

Christmas jeans for genes appeal

Jeans for GenesIt's getting to be that time of year when everyone is getting into the giving spirit, so this seems like the perfect time to mention how we can support CGD research, and the Jeans for Genes project seems like one of the best ways. The original UK website seems to be the most active and have the most information but there is also a USA chapter and one in Australia, that I know of.

So you can give a donation or buy a ribbon or wristband from one these chapters, but why? Well, because the money goes to improving the life of CGDers and others with childhood genetic disorders. In the US, for example, two important projects are being funded this year. One to develop a vaccine for fungal infections (sweet!) and one to understand how gamma-interferon works to improve resistance to infection in CGD patients. So check out these worthy charities and see what you can do to help!

Submitted by Tracy on Sun, 2006-12-03 10:39. read more | login or register to post comments

CGD on House

Episode #308 of the Fox series House features a patient with CGD. The episode, "Whac-A-Mole", will re-air on the USA network Friday, December 1st, at 11pm EDT.

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Submitted by Tracy on Sun, 2006-11-26 14:08. 4 comments