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Which advice would you give to someone who has just been diagnosed with Granulomatosis with Polyangiitis (GPA)?

Advice for the newly diagnosed with Granulomatosis with Polyangiitis (GPA), written by people who have lived it. What they wish they had known on day one.

Granulomatosis with Polyangiitis (GPA) advice
2 answers
Learn all you can about it !!! Keep a journal so when you go to your different specialist you will be better prepared to tell them how you feel and write questions down you want to ask them !!! You are your best advocate !!!!
Posted Jul 26, 2018 by Leo 1500
Do not ignore the signs, everyone is different to the way they respond to this disease and to the treatment of this disease, do not get discouraged and be prepared to fight
Posted Jul 30, 2018 by Terry 2500

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Stories of Granulomatosis with Polyangiitis (GPA)

GRANULOMATOSIS WITH POLYANGIITIS (GPA) STORIES
Granulomatosis with Polyangiitis (GPA) stories
DONE CHASING RABBITS!
My journey with this monster of a disease started out in March 2018 with ear problems and quickly persisted into all of my joints rendering me disabled and having to leave work after a month of hobbling around campus like an old woman. I finally tapp...
Granulomatosis with Polyangiitis (GPA) stories
STILL UNKNOWN
For about a week I was having a dry cough/asthma flare up that I first went to our local urgent care(my regular GP was out the country for the next month) on June 28th, and they diagnosed me w. cough and acute bronchitis which they treated with a bre...
Granulomatosis with Polyangiitis (GPA) stories
DAN
Had sever fatigue and joint pains. Began coughing up blood. Went to hospital. Admitted right away. Lung and Kidney biopsy. 60mgs Pred w/ 1 year taper. 4x Rituxan. 150mgs Imuran orally. Feel better. In Remission.

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