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Please is there anyone diagnosed with chronic granulomatous disease?

Blood Cancers & Disorders | Last Active: Nov 25, 2023 | Replies (11)
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@samuedion2665

Hmmmmm... I've been diagnosed since five years now..

Thank you for the response!

Pain is too much for me to bear

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Replies to "Hmmmmm... I've been diagnosed since five years now.. Thank you for the response! Pain is too..."
Lori, Volunteer Mentor | @loribmt | Sep 25, 2023

I’m so sorry to hear you’re in so much agony with this disease. I don’t know if you’ve seen this website or not but they have programs to help patients with CGD

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.pdfhttps://www.medicalnewstoday.com/articles/chronic-granulomatous-disease#definition

Are you on any type of treatment and seeing a specialist? Has there been any genetic testing done to see which mutated gene you have?

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samuedion | @samuedion2665 | Sep 25, 2023

@loribmt diagnosed with fistula in ano in the first place. Did fistulectomy, sigmoid colostomy and yet the problem still persists...

It was later detected few months ago that it's Chronic Granulomatous Inflammation...

Associated with lots of pains
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