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.

Jaden's transplant blog

Hello CGD families,

I started a blog for Jaden to chronicle our journey from CGD diagnosis through his cure (he will be getting his cord blood transplant on July 9th at Duke):

 http://jadendhaliwal.blogspot.com/

I would love to share information and provide support for other families in the same situation. Fell free to visit our blog and post comments. Please keep Jaden in your prayers as we leave for Duke on June 12!

 So excited but anxious as well. Pray all goes well and we come back home cured of CGD!

 Kiron

Submitted by kiron on Mon, 2009-05-25 22:02. kiron's blog | login or register to post comments

NIH research study

Hi everybody.  I have not posted or read anything for some time.  My son Gord is now 18 years old and doing very well.  We have recently been in contact with  the NIH and they have offered a clinical trial for us to participate in.  Has anyone had much experience with this situation?  Gord is planning on attending University in the fall and we were wondering how disruptive vs. helpful this might be?  Thanks for any input.  Kathy W.  

Submitted by Kathy White on Wed, 2009-05-20 17:18. Kathy White's blog | login or register to post comments

How Do I File for SS Disability

Hi. It's been a long time since I've posted but I have been having some problems in life (lost my job of 10 years and can't find another one with health insurance) and would appreciate any inpuit from any of you who have had to file for Social Security Disability benefits. I am looking to file for disabilty since I have not been in wonderful health for at least 5 years and can't find another job that can offer me medical insurance and I don't think I'll be able to find a job where they will be okay with me being gone as much as I tend to be either.

 I welcome any help or advice you may have.

Submitted by Lostboyb on Sat, 2009-02-21 17:05. read more | Lostboyb's blog | 3 comments

remicade

Hello  All

    The Nih is starting a remicade protocol for 25 patients with Cgd that have IBD symptoms. We are considering this due to Domenic's constant battle with his bowels. In the past we did go through 2 rounds of remicade but Domenic picked up an infection so we had to stop, but I think its time to try again.Has anyone else been contacted please respond.

Thank You

Mark 

Submitted by mcenci on Fri, 2009-02-06 08:54. mcenci's blog | 2 comments

Prayers needed!

I am pasting a message from Dawn Adams regarding Jax, one of her sons who went through the BMT a year ago.  The 2 boys just had checkups within the past week and then Jax starting seizing at dinner.  Please reach out to show support and keep Jax and the family in your thoughts and prayers!

~Sue Van Ness

http://www.caringbridge.org/visit/zachandjaxsen

 

&q

Submitted by Sue V on Fri, 2009-01-30 06:32. read more | Sue V's blog | 2 comments

Bone Marrow Transplants

I am hoping that members of our CGD family will reach out to 2 families that I have grown close to via the internet (Facebook in particular)...the Ahad's in England and the Delgado's from Arizona.  Kelly & Andy Ahad have a little boy, Tyler, who went through the BMT and experienced GVHD and may need a liver transplant as a result.  Kelly also has another little boy, Aiden, who has CGD, and they plan on pursuing the BMT with him as well at some point.  To read about them and show your support, go to www.facebook.com and type in " Living With Chronic Granulomatous Disorder CGD". 

Submitted by Sue V on Wed, 2009-01-07 07:43. read more | Sue V's blog | 3 comments

CGD on House

Hello, an episode with cgd is on (usa) this sunday morning at 9:am 12-28-08. I have no idea how accurate or if it is any good but i'm going to record anyway so i can see for myself.

Submitted by mcenci on Fri, 2008-12-26 17:29. mcenci's blog | login or register to post comments

stem cell transplant cured

My name is greg I am 35 years old and was born with cgd I was treated most of my life at nih by dr harry and dr mitch horwitz and dr steven holland I had the stemcell transplant ten years ago and I been cured since then I fanyone has question about the transplant or the after or long term effects please send me a email thanks 

Submitted by Greg on Thu, 2008-11-20 20:14. Greg's blog | 3 comments

Transplant

Hey everyone, I am just giving an update on myself. I recently got married and I am just starting in talks with the NIH about a bone marrow transplant. My brother is a perfect match with me so that is the best. If anyone has had this procedure can you tell me how the treatment was? Any problems or complications? Anything would help. I have gotten into this subject in the past but the success rates were too low for me to go ahead. Now the rates have gotten dramatically better and I am interested again. Thanks , and hope everyone is feeling well

Submitted by mattjkemm on Wed, 2008-10-29 12:44. mattjkemm's blog | login or register to post comments

TV Program about Evan Airs Tuesday night, August 19, 2008

The ABC Prime Time Medical Mysteries program that was filmed last year on Evan's Chronic Granulomatous Disease diagnosis airs on Tuesday night, August 19,

Submitted by Teresa M on Mon, 2008-08-18 13:31. read more | Teresa M's blog | 4 comments