Granulomatosis with polyangiitis - also called Wegener's granulomatosis

Hello everyone. It appears that this very rare condition that causes inflammation of the blood vessels doesn't have a lot of "community" based support groups that I've found and I'd like to see if there are others out there looking for answers.

My goal would be to share treatment methods, help with diagnosis, and find ways to help manage the condition so that everyone can live their lives to the fullest without feeling like they're losing their identity during a major flare... where you become the "sick person" to everyone.

For anyone who doesn't know: Granulomatosis with polyangiitis is an extremely rare long-term systemic disorder that can affect the ears, nose, throat, lungs, and kidneys. Blood flow to organs and tissues may be reduced, causing damage.

Symptoms may include sinus pain, cough, fever, joint aches, blood in urine, and hearing loss.
Treatments include drugs that suppress the immune system and monitoring for recurring symptoms.

Please post up your experiences and share the community if you've been impacted by GPA/Wegener's.