Thank you so much for helping with this valuable information. I was just diagnosed with CGD. I believe I have had the symptoms for many years, but labs were ok. I would tell my reumatologist, that sometimes I felt I was goingin to die. But no professional understood what was wrong with me and the crisis that I was feeling in my whole body. I am 62 yrs old now and I am shocked, but positive. Thanks to God for professional like ya'l.
This is very informative, clear, and focused. I really learned a lot. One thing not mentioned is CGD and breast health. That information would have been helpful to the many women (and some men) dealing with this issue.
I was just diagnosed with dcg. Just hit 50 years old. Spent 20 years in the military and I cant believe this just came up. Explain some youth issues I had, maybe I had this all along.. hard to say I guess. I find this a little crazy.
I was also diagnosed with it. I'm in my 50s. I got diagnosed through a CT scan of my lungs. Is that how you guys obtained your diagnosis? I'm now trying to figure out who to see, where to go. My pulmonologist doesn't seem to know anything about it.
@@DNAleguillou I was just diagnosed about 2 weeks ago. I also had a type ab thymoma removed February 9th. This is all very new to me. I don’t even have a lung doctor yet. I don’t see my surgeon till the 28th of this month for a post op visit. Like you I don’t know what to do next. Did you find a doctor who knew something about this condition (disease)?
I’m 51 & was just diagnosed. I already have an autoimmune disease & now this. I have fatty swollen lymph nodes under my arm pits & groin. I’m having horrible itching & burning facial/neck & chest rash. Extreme fatigue. I have upper body pain & inflammation in my hands, arms, shoulders. Low pain in my feet, knees & hips. Vision problems, swelling in my hands, runny nose, facial swelling w/rash. Dry mouth & mouth sores. Oral Thrush often. I stay thirsty, have memory loss & also heart palpitations. And a RA Specialist found mine in my lungs. On an X-ray & CT SCAN
Something they wont say because you mentioned military, know this loudly, if its not a genetic connection, CDG is also connected to toxicity and untreated parasitic conditions... they never let you know what is wrong if these issues caused it cause we cant tell the truth can we!!!!!!!!! Then good luck getting treated....
I wish somebody would get ahold of me. My grandson has this. I have wrote messages on here so many times and nobody gets ahold of me. My grandson is they realized he had this an August. He turned a year and June. So he keeps having complications. And we're waiting for the bone marrow dr. To get ahold of my daughter-in-law or son and they discovered this an August so the bone marrow Doctor hasn't done no hold of it and I'd like him to go through this as soon as you can so we don't keep having complications with this. Can somebody get ahold of me? And I'll forward it to my son and daughter-in-law. Thank you.
@@audrey12893he is at the children’s hospital right now.. meeting with dr about stem cell or bone marrow transplant, no idea if he will be a candidate..is this your email address?Audrey. Reading responses from some and they find out in their 50s and didn’t know, that’s encouraging they lived so long..
Thank you so much for helping with this valuable information. I was just diagnosed with CGD. I believe I have had the symptoms for many years, but labs were ok. I would tell my reumatologist, that sometimes I felt I was goingin to die. But no professional understood what was wrong with me and the crisis that I was feeling in my whole body. I am 62 yrs old now and I am shocked, but positive. Thanks to God for professional like ya'l.
This is very informative, clear, and focused. I really learned a lot. One thing not mentioned is CGD and breast health. That information would have been helpful to the many women (and some men) dealing with this issue.
Hi Eleanor, what is the issue that can happen with breast health and CGD? I’m a carrier and my son has it.
I was just diagnosed with dcg. Just hit 50 years old. Spent 20 years in the military and I cant believe this just came up. Explain some youth issues I had, maybe I had this all along.. hard to say I guess. I find this a little crazy.
I’m in that same boat. I’m 43 and I was just diagnosed as well. It also explains a lot of my life long issues that I’ve been dealing with.
I was also diagnosed with it. I'm in my 50s. I got diagnosed through a CT scan of my lungs. Is that how you guys obtained your diagnosis? I'm now trying to figure out who to see, where to go. My pulmonologist doesn't seem to know anything about it.
@@DNAleguillou I was just diagnosed about 2 weeks ago. I also had a type ab thymoma removed February 9th. This is all very new to me. I don’t even have a lung doctor yet. I don’t see my surgeon till the 28th of this month for a post op visit. Like you I don’t know what to do next. Did you find a doctor who knew something about this condition (disease)?
I’m 51 & was just diagnosed. I already have an autoimmune disease & now this.
I have fatty swollen lymph nodes under my arm pits & groin.
I’m having horrible itching & burning facial/neck & chest rash.
Extreme fatigue. I have upper body pain & inflammation in my hands, arms, shoulders. Low pain in my feet, knees & hips.
Vision problems, swelling in my hands, runny nose, facial swelling w/rash.
Dry mouth & mouth sores. Oral Thrush often.
I stay thirsty, have memory loss & also heart palpitations. And a RA Specialist found mine in my lungs.
On an X-ray & CT SCAN
Something they wont say because you mentioned military, know this loudly, if its not a genetic connection, CDG is also connected to toxicity and untreated parasitic conditions... they never let you know what is wrong if these issues caused it cause we cant tell the truth can we!!!!!!!!! Then good luck getting treated....
Thank you!
Dose anyone know of previous granulomatous disease
I wish somebody would get ahold of me. My grandson has this. I have wrote messages on here so many times and nobody gets ahold of me. My grandson is they realized he had this an August. He turned a year and June.
So he keeps having complications. And we're waiting for the bone marrow dr. To get ahold of my daughter-in-law or son and they discovered this an August so the bone marrow Doctor hasn't done no hold of it and I'd like him to go through this as soon as you can so we don't keep having complications with this. Can somebody get ahold of me? And I'll forward it to my son and daughter-in-law. Thank you.
Hi Linda, my son was just diagnosed. Would love to connect with your daughter as we are both in the same boat with our sons having CGD.
@@audrey12893he is at the children’s hospital right now.. meeting with dr about stem cell or bone marrow transplant, no idea if he will be a candidate..is this your email address?Audrey. Reading responses from some and they find out in their 50s and didn’t know, that’s encouraging they lived so long..
Good Job! Thank You!!👍