Getting patients well, keeping them well, and focusing on a cure
Do I Have CGD?
After Being Diagnosed
General Information about CGD
Support for Parents/Patients
Doctor Visits & Hospitalizations
Specific Infecting Organisms
Specific Disease Help
Your Time in the Hospital
Updates on CGD Patients (2011)
Updates on CGD Patients (2013)
Professional PID Links
Contact & Nonprofit Info
After Being Diagnosed
Precautions for Chronic Granulomatous Disease Patients
Patients with CGD are especially at risk to acquire unusual fungal infections. The following list can help you eliminate unnecessary exposure to fungi.
REMEMBER ó You cannot be too cautious with your health.
Early Signs of Infection
CGD patients should consult their doctor at the earliest sign of an infection, even if they are experiencing minor symptoms.
Welcome to Holland
This piece was written by Emily Perl Kingsley, the author of the television movie, Kids Like These:
I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. Itís like this.....
When youíre going to have a baby, itís like planning a fabulous vacation trip - to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. Itís all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess come in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean, Holland? I signed up for Italy! Iím supposed to be in Italy. All my life Iíve dreamed of going to Italy."
"But thereís been a change in the flight plan. Theyíve landed in Holland and there you must stay."
"The important thing is that they havenít taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. Itís just a different place."
"So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met."
"Itís just a different place. Itís slower-paced than Italy, less flashy than Italy. But after youíve been there for a while and you catch your breath, you look around, and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts."
But everyone you know is busy coming and going from Italy, and theyíre all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, thatís where I was supposed to go. Thatís what I had planned. And the pain of that will never, ever, ever go away, because the loss of that dream is a very significant loss.
But if you spend your life mourning the fact that you didnít get to Italy, you may never be free to enjoy the very special, the very lovely, things about Holland.
The Two Large Pots
A water bearer in China had two large pots, each hung on the ends of a pole which he carried across his neck. One of the pots had a crack in it, while the other pot was perfect and always delivered a full portion of water. At the end of the long walk from the stream to the house, the cracked pot arrived only half full.
For a full two years this went on daily, with the bearer delivering only one and a half pots full of water to his house.
Of course, the perfect pot was proud of its accomplishments, perfect for which it was made. But the poor cracked pot was ashamed of its own imperfection, and miserable that it was able to accomplish only half of what it had been made to do.
After 2 years of what it perceived to be a bitter failure, it spoke to the water bearer one day by the stream. "I am ashamed of myself, and because this crack in my side causes water to leak out all the way back to your house."
The bearer said to the pot, "Did you notice that there were flowers only on your side of the path, but not on the other pot's side? That's because I have always known about your flaw, and I planted flower seeds on your side of the path, and every day while we walk back, you've watered them. For two years I have been able to pick these beautiful flowers to decorate the table. Without you being just the way you are, there would not be this beauty to grace the house"