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CGD (Chronic granulomatous disease): Is BMT next?

Bone Marrow Transplant (BMT) & CAR-T Cell Therapy | Last Active: 4 days ago | Replies (9)
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Profile picture for cgdboymom @cgdboymom

Hi, my son 16 months was just diagnosed with CGD. How is your son doing ? How are you ?

I am searching for information but can’t seem to find much. I was wondering if you’d be willing to share how your son is doing now? And a little more about your experience?

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Replies to "Hi, my son 16 months was just diagnosed with CGD. How is your son doing ?..."
Lori, Volunteer Mentor | @loribmt | May 3 1:59pm

Hi @cgdboymom While you’re waiting for a response I’d like to welcome you to Mayo Connect. I found some information for you regarding your son’s condition of CGD Chronic Granulomatous Disease:
https://rarediseases.org/rare-diseases/chronic-granulomatous-disease/
Other informational sites which might allow you to find some help.
https://cgdsociety.org/wp-content/uploads/2019/05/CGDS-Medical-Guide.pdf
https://www.medicalnewstoday.com/articles/chronic-granulomatous-disease
If you don’t mind sharing a little more, what type of treatment is your son receiving? Since this is a rare disease, has he been evaluated at a larger research/teaching hospital? Has how was his diagnosis discovered?

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