Hi all my name is Helen and my son Adam had his 1st Bmt due to Chronic Gramultosius Disease in 2016 ,in the RVI in Newcastle. It was a whirlwind from been diagnosed in the October to having it the following march. The support we got from the bubble foundation in Newcastle was fantastic. He is potentially facing a second one next yr. Hes Chimerism count had died off and is now at critical stage. My heads swimming with all the questions. The risks involved now hes 24 a adult the risks are higher. A lot of people dont understand ,apologies hugely and no offence meant . But it the diagnosed was cancer i think more people would. So sorry if this is maybe the wrong place . But just needed to say hi and get it off my chest. Has anyone on here had or are dealing with Chronic Gramultosius Disease. Thank you for reading this 
Helen a very worried mum x
Hi Helen,
I am Liam, the Patients and Families Manager at Anthony Nolan. I am sorry to hear of the difficulties your son Adam has been having.
I wanted to wait to see if any other forum members reached out with their own experiences, but I don’t think there isn’t anyone here dealing with Chronic Granulomatous Disease. I have found a charity that deals with CGD and here is the link : https://cgdsociety.org/
There is a lot of information and areas of support available there too.
All the best
Liam