My son Adam 2nd Bone marrow transplant
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
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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