The CGD Café

Hello everyone. I was just wondering if anyone's CGD child has qualified for disability in the U.S? Logan is now 8 yrs old and I've applied atleast 4 times since birth, denied all 4 times.  This past year I havent been able to work due to the 5 lung infections that he has had. It's hard making it on one income these days. I'm wondering if i need to concider getting a lawyer involved. I need some feedback if anyone has any info. for me. Bye for now.                                       Jamie

how is everyone doing?

Happy birthday to Kobe.

Hi, my son has had CGD for the past ten years, on a recent check up it was suggested to us that we consider Bone Marrow Transpalnt. As i have gotten more information the more overwhelmed i have felt. Matt has been lucky enough to have kept good health in recent years. Prior to this he had a lot of lung infections which has left them damaged.I was interested in other people's experiences had been, or what information has been helpful to them. Jill   

I'm so glad to have found a site like this, and i'm looking forward to talking to everyone! It is so great for shawn to have people who actually know what it is like to have this illness. Does anyone know of any other great sites like this? we are currently searching for alternatives to shawns current treatments. Any ideas please post !!!! THanks!!!

Marissa

O.k so I am wondering if anyone is planning on attending the IDF conference in MO...I am assuming missouri...?

I didn't go last year to Orlando but wonder about going to this one. Who has gone and is it valuable to go to?

I will check out the flights and rates....where would one stay?

Thanks

Denise
Toronto Ontario

Hello. Well this is all new to me partisipating by writing on this website, I'm usually reading. To introduce myself and family--My name is Jamie Trobaugh, I have an 8 yr old son, logan with cgd and an 1 yr old son, levi without cgd. I also have two daughters,lindsey whos now 18, and Leigha whos 10 yrs old.They are both carriers. Along with my husband Tom we've all been trying to help logan fight this disease the best he can. We recently had Levi,hi brother tested for a bmt match via cord blood, but with no luck his test was only a 2/6 match, not very good odds the docs say. I havent talked with any other cgd moms,but would like too-especially any with cgd boys around logans age.

Hello everyone, I am Ryan

 I just recently became a member to the community and just wanted to introduce myself.

The site is great and easy to use.

I look forward to talking to everyone in the future.

Sincerely,

Ryan

Hey Everyone.

The holidays were eventful for us.  We had a scare with Ben right after Thanksgiving.  One night, I felt a small lump on his neck.  By the next night, it had grown to the size of a small egg in his tiny neck.  After a surgery at Duke and a month of antibiotics via a PIC line (gentamicin for a week and nafcillin for a month), he seems to have beat this one!   It turned out to be a very bad staph infection. 

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

Okay, I'm still being tested. I have a stack of bloodwork to get done this week. Here's where I'm coming from. I've been having to go to ENT's my whole life. I used to average about 3 sinus infections a year. Now I average an infection every 4-6 weeks, usually needing steroids (Bladder, kidney, lung, sinus, abscesses, boils). This has been my pattern for the last, at least 15, years - no kidding. I have been so compartmentalized, no one has seen the whole picture except me. Finally I connected the dots for my ENT and he said "GET TO INFECTIOUS DISEASE NOW!!!!!"