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GPA granulomatosis with polyangiitis
Autoimmune Diseases | Last Active: Mar 18, 2022 | Replies (44)Comment receiving replies
I have read about this disease since my son was diagnosed with it two years ago at the age of 18 years. What I have read is that a person normally wouldn't be diagnosed with this until they are in their mid 40's. I guess he was diagnosed so early due to the fact that he is very athletic and this effected his lungs. He had what the doctor called cannon size nodules in his lungs. I cannot find another sole in the US that was diagnosed that young and am just really trying to find someone he can talk to about this. He is in College and still in and out of the hospital for treatments. He is struggling and I hate to see it.
Replies to "I have read about this disease since my son was diagnosed with it two years ago..."
Hello!
I was diagnosed with GPA a year ago and I found this online support group: https://www.wegeners-granulomatosis.com/forum/. There are members the same age as your son. There are also local support groups affiliated with the Vasculitis Foundation either currently in your area or you could start one. I have found both of these to be tremendously helpful as I navigate my “new normal.”
Anna
@rphillips85 hi! I was 21 when I was diagnosed with GPA, same with me, I was an athlete!
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Hello @rphillips85,
Welcome to Connect. I’m sorry to learn about your son's diagnosis. We are glad you’ve joined our community. Granulomatosis with polyangiitis, formerly called Wegener’s granulomatosis, falls in a group of blood vessel disorders called vasculitis. Here is some information from Mayo Clinic:
-- http://mayocl.in/23sbZcI
I encourage you to read Mayo Clinic patient Trish Byrd’s story, about her journey with this condition; you can view it here:
-- http://mayocl.in/2oewSsF
I am tagging our moderator Kanaaz @kanaazpereira to see if we should move your post to the following discussion which will give your post more visibility.
Groups > Autoimmune Diseases > GPA granulomatosis with polyangiitis
-- https://connect.mayoclinic.org/discussion/gpa-granulomatosis-with-polyangitis/
@rphillips85 thank you for being an advocate for your son. The more you and your son can learn about his health condition, the better you can work with your doctors on a treatment plan. Have his doctors come up with any treatment plans that have helped?
John