CGD: Clayton's Story

Clayton Cowan, of Fulton, MD, was born with a rare disease called chronic granulomatous disease (CGD), which occurs only in one out of a million people. The condition is caused by a glitch in the immune system that makes it very vulnerable to germs and results in recurrent chronic infections, some of which can be life threatening. Clayton was not diagnosed until he was 2 and had a severe, life-threatening lung infection. He was taken to Hopkins Childrens where the brilliant Dr. Howard Lederman had a diagnosis for us within 48 hours, says his mother, Marty. Clayton stayed at Hopkins Childrens for three weeks while doctors figured out the appropriate course of treatment. The Cowans now must be vigilant and watch for any signs of infection. If Clayton has a fever for more than two days, he needs to undergo blood tests and X-rays to rule out serious infection. The greatest threats to Claytons health are recurrent bacterial and fungal infections. He takes antibiotics and antifungal medication every day to prevent them. He also receives interferon-gamma injections three times a week to boost his immune defense, but this is definitely something he doesnt look forward to. Clayton's parents try to keep a healthy perspective about his exposure to bacteria and other germs.

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  Science & Technology

[carl mcdermott]

Im 20 years old i got the disease when i was very young i know all about the meds and the shots at 20 i still hate taking them ps i have to do one tonight :( .Just keep your head strong and lets hope for that cure :) God bless

[Darla Harris]

My heart goes out to you and your family. I lost a son to CGD at the age of 2 1/2 back in 1995. I have since been diagnosed with Lupus and a carrier of CGD. My daughter is 20 and expecting her first child and she also was diagnosed as a carrier during her pregnancy.

[carlsuth]

Hi there, my brother and I both have CGD. I just turned 27, but sadly my brother passed away in July last year age 28 :( Like the person below said, you're not alone. There are a number of "groups" on Facebook (one which my brother set up) where there are many families with CGD who talk about their experiences, so anyone who views this, please feel free to join them.

[Roberto Vargas Saucedo]

Hey there, I really hope clayton is doing well and wish him the best of luck, i am a CGD patient as well i just turned 20 a couple days ago, and sure as hell do know what he goes through, hes a trooper. my lil brother as well has this CGD turning 14 in june. but anyways. Just wanted to let you guys know that you guys arent alone. if you ever have any questions feel free to email me anytime Robertobobo7@yahoo.com

[Roberto Vargas Saucedo]

@Tydrumma609  Hey there i am also a patient with CGD and am now 20 years old. Was diagnosed at the age of 1, my lil brother also unfortunately has it as well and is 13, he was diagnosed at the age of 4. i would like to make contact with you and maybe share stories :) talk about what you've been through, and what ive been throough. email me at robertobobo7@yahoo.com

[connie mcvay]

Lost my son a month after his 3rd Birthday to CGD.Noone had any idea what he had until it was to late.Dr. at U.C Davis in Sacramento had put us in touch with Dr.John Curnutte who is like the godfather for this disorder and has been from the time CGD was named.My youngers daughter now 19,has CGD and we pray for a cure so she may have children without the worries of passing the disease on .God bless all you who have this terrible disorder and to the loved ones who watch them suffer.

[Tydrumma609]

Good luck Clayton and the Cowan family, I was diagnosed with CGD when I was very young and my brother has had it for 10 years, it makes feel not alone that there are people out there who take the same medication and are vulnerable to the same things I am. God Bless

[caveninit]

We need a cure for this disease NOW! I lost my precious 13 year old son to this disease in July 2011. I also have identical twins with CGD. I hate this disease and my heart goes out to all of you who have it or have children who have it.

[birchfields11]

My sons were 4 and 14 years old when they died from cgd - the suffering they both went through was terrible. Hopefully now 12 years on they are closer to finding a cure.

[Tracey Slaven]

Really hope there is a cure soon for your son and my twin sons. x I completely understand what your going through. x