top of page

Amanda's Story

My 14 year old son was diagnosed with Wegener's/Granulomatosis with Polyangiitis in November 2022.  His first symptoms were nose bleeds with body aches to the point he could barely walk. We went to the hospital and they put him on antibiotics and treated him for Lyme's disease.  2 days later we went back because his nose was bleeding for more than 30 minutes, and we could not stop the bleeding.  The emergency room got the blood to stop and said he had Rheumatoid Arthritis and they recommended us to see an ENT doctor and a Rheumatologist.  3 days later we went to a different hospital because he was coughing up blood and they sent him to a PICU where he was diagnosed with GPA. He spent a total of 3 weeks in the hospital and they released him after his first dose of Rituxab.  My mission is to make everyone aware of this deadly disease so that nobody else has to go misdiagnosed and possibly lose a life. Please help to spread awareness of GPA.

Si Bstt

Si Bstt's Story

I was diagnosed with positive ANCA in 2013 but because I was not informed about the severity of the disease, I did not really know what I had.  I have never been addicted to drugs or smoking and my diet has always been very healthy, but my health was deteriorating more and more. I looked at several Rheumatologists and one of them even dared to tell me that mine was psychosomatic and at this point my husband was bathing me because the pain was so much throughout my body. I was constantly bleeding from my nose and my kidney's were deteriorating. I am writing all this because even the doctors themselves are not very familiar with vasculitis. Because the disease is more inside at first and then it progresses. It is a painful and exhausting disease.  To all of you be strong and I will pray for a cure. God bless you.


Laure's Story

First, it’s time to take a moment to express my gratitude.  Just one year ago; I wondered, if life itself was a bridge too far.   I hope the sharing of my Wegener’s GPA in a bit more detail can help patients, their caregivers and family members and the medical professionals that are critical in our survival and recovery.

In early January of 2022, it started with a toothache, chronic nightly low grade fevers, chronic painful sinus infection and no energy.  By the end of January, there was an increase in the Ground Glass Opacities (GGO’s) in my chest X-Ray.  During February my General Practitioner had prescribed 2 rounds of ever stronger antibiotics along with an ENT referral. Simultaneously, because I am a renal cell carcinoma survivor, my kidney surgeon recommended a CT Scan to look more closely at the GGO’s .   It would have to wait because we were headed to Key West for some hoped for natural relief provided by the sun, humidity and the company of friends.  Instead, my symptoms worsened.  By the beginning of March, I visited the ENT was placed on Doxycycline, having nosebleeds, coughing and feeling worse every day.  I had a CT scan of my chest cavity to assess the GGO’s followed the next day with a CT scan on my sinuses.  Had some routine bloodwork on March 15, it showed nothing of note.  My BUN was 16mg/mL, my Creatinine was 1.05 mg/mL with a eGFR of 58.  Perfectly normal for my one remaining kidney.


The results from the Chest CT hit the patient portal before I had a chance to hear from my Kidney Surgeon; Radiologists notes - Preliminary Lung Metastasis diagnosis.  Yes, that is as grim as it sounds, I was dying from lung cancer.  My Kidney Surgeon referred me to his oncology partners specializing in advanced cancer treatments but recommended that I take a few vacations, no hurry, just set up an appointment with the oncology team.  Ok that’s some really bad news…


My wife and I headed south to visit family, there were some fun moments mixed with moments of sheer terror over my symptoms.  I was having middle of the night nose bleeds, coughing until I threw up and mostly was just existing.  My poor wife was trying desperately to hold all the pieces together while watching my symptoms progress.  I wanted to just sit still; wrapped up in a blanket, but even that brought no comfort.  Lung Cancer was not supposed to progress this fast.  We returned home early. 


During my follow up with my ENT, he remarked: “it looks like a mild sinus infection”.  My reply: “if this is mild, I would hate to know what a serious sinus infection looks like”.  He looked at me for a minute, stroked his chin and muttered “I wonder…”  He joined his nurse assistant and started to direct her to select a couple of things to test in my bloodwork.  Neither of us knew it but this interaction was the difference between life and death in my case.    On March 28th, I took the blood test my ENT had ordered for me.  We contacted the hospital on March 31, to let them know how fast my condition was deteriorating.  My Surgical Team set us up for immediate reception and admittance at the Urgent Care in NYC. 


My wife: “How long should we pack for?”  Me: “I don’t know, I guess a week.  Just in case.”  My wife braves the drive into NYC for the 1st time in her life, not a goal she had.  I am worse than useless.


After the obligatory, seems like forever wait, we are cracking each other up because I am freezing, and she offers to cover me up with paper towels (the only thing available to us in the room).  Then bloodwork results start coming in; kidneys are clearly failing (BUN 56 mg/dL, Creatinine 7.7 mg/dL, eGFR 6).  My X-Rays show that my lungs are full of something, of course the sinus congestion is still there. What is it?  Some sort of rapid progression Lung Cancer, perhaps dehydration? Pump me full of fluids, bloodwork gets worse, I get admitted, my wife gets kicked out and finds an NYC hotel nearby.


April 1 - Bloodwork every hour, results not improving, not dehydration as I am now puffed up like a balloon from the fluids.  I can barely move.  My wife can visit but mostly must watch me sleep and beg me to eat.  They kick her back to the hotel at 6:30pm.  About midnight I am shaken awake by the night nurse.  Turns out my wife has been working with my brother via text messages, both of them pouring over results.  The results from the tests my local ENT had run back on March 28 have kicked through.  We have the lifesaving diagnosis.  Good news, it’s not cancer, it is treatable but not curable and it’s rare as hell.  I have Granulomatosis with Polyangiitis (GPA) formerly called Wegener’s Disease.

April 2 – Overnight, my treatment switches to life saving steroid infusions.  Without the results from my local ENT’s March 28th orders, my clock would have run out.  By the time I presented to Urgent Care on March 31, it was already 2 to 3 days too late to run the ANCA, ANA, and Sedimentation Rate blood tests in time to save my life even if they thought to run the test the 1st day.  It was not included in my initial rounds of testing.  

April 4 – Kidney and lung biopsy is scheduled to confirm there is no cancer reoccurrence.  Oops, a pneumothorax (collapsed lung) from the GPA lung progression cuts the biopsy short, I manage to keep the team busy for 11 hours transfusing and trying to put me together again.  I wake up with a chest tube and literally watch/listen to the clock minutes tick for hours, alone in the dark, as I wonder “is this it”?

April 5 – Dialysis “lite” and 2nd Transfusion, my bloodwork improves significantly. 

April 6 – Kidney Biopsy – No signs of cancer, it is truly GPA only.

April 7  – Steroids and Rituximab to block my immune system, plus handfuls of pills to ward off the side effects of the steroids.  Then my wife’s internet sleuthing uncovers a recently approved drug (Avancopan), specifically to replace the long term steroids commonly used in conjunction with Rituximab to treat GPA!


Once discharged on April 15 after 17 days in the hospital, we meet with a leading Rheumatologist specialist in NYC, who determined that the new drug will likely be the best course for me.


One year later.  My sinuses are clear, my lungs are completely healed; kidney is up to 30%, enough to keep me comfortable. I have managed to barely dodge dialysis but will likely face a kidney transplant at some point.  I fortunately only required steroids for 3 months before I switched to Avancopan,  so no long term steroid side effects. My prognosis is good.  I am walking up to 2 miles/day comfortably, I am back to work full time (remotely).


I am so very fortunate!  I have a wonderful wife who left no stone unturned, a great family who did everything they could, great friends who kept the pieces together while my wife was carrying me forward.  I also was privileged to have a great team of medical specialists, an ENT that ordered the test that saved my life, nurses and lab techs that were able to execute the fastest treatment protocol change that the hospital had ever experienced. 


I am grateful for the gift of another year. 

Please share your story!

Your story is our story. We want to hear from you about your experience with Wegener's, your journey to diagnosis, how it's impacted your life, your path to recovery, your challenges, your grief, your love. Bring it all.

We want to support your GPA journey and share it with others to fight delay in diagnosis and save lives.  Please email your story to

bottom of page