Is there anyone diagnosed with chronic granulomatous disease? Associated with severe pain,. inflammation, and fistula in ano…
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Hello @samuedion2665 Chronic granulomatous disease is an inherited condition making it a little more rare. But I was able to find 2 members who have CGD or a family member with this disorder.
@mrsmarvl started this discussion earlier this year regarding her husband having CGD so I hope she’ll pop back into the conversation to maybe give you some guidance.
Chronic granulomatous disease (CGD): How to build the immune system?
Also, @ginacostello mentioned in another discussion that she also has CGD. Gina may able to share her experience with you as well.
Since this is an inherited condition, though it may not be discovered until later in adulthood, was this a recent diagnosis for you?
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Hmmmmm… I've been diagnosed since five years now..
Thank you for the response!
Pain is too much for me to bear
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
Other informational sites which might allow you to find some help.
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?
@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
None has been done… I'm seeing a specialist but no solution has been provided
I will check those site out thanks so much
Too much pains
Hi Samuel, please note that I removed the documentation that included personal identifying information.
It sounds like you are looking for a medical professional opinion. If you would like to request an appointment with a Mayo Clinic expert, you can get started here http://mayocl.in/1mtmR63
Mayo Clinic has locations in the US as well as London in the UK.
You may also wish to look into the Mayo Clinic Care Network to find care closer to home.
The Mayo Clinic Care Network is a select group of independent health systems that are granted special access to Mayo Clinic's extensive knowledge and world-leading medical expertise. The Mayo Clinic Care Network helps keep care local by providing guidance and answers to many questions that might otherwise require a referral to a specialist. See the member hospitals in the US and other countries here:
– Mayo Clinic Care Network https://www.mayoclinic.org/about-mayo-clinic/care-network/network-members
@colleenyoung I am not living in U.S
I'm from Nigeria.
Needed a proper diagnosis!
I was recently diagnosed. I am afraid I don't know much. I have pain that moves from one place to another after a period of time. Don't know if that is related. I am 61 and it took approx. 2 years to reach the diagnosis. Started with odd spots in my lungs, liver and spleen. I am here to learn more. I wish I could help.
Welcome, @sherocko. You may also be interested in this related discussion:
– Chronic granulomatous disease (CGD): How to build the immune system?
It sounds like you had a long road to getting a diagnosis. What suggestions or treatment has your medical team offered for infection management? What steps do you take to prevent bacterial and fungal infections before they start?
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