Posts Tagged
‘Granulomatosis with Polyangiitis’

Over 300 million people are living with one or more of the 6,000+ rare diseases in the world today. I am one; I am rare. In October 2019 I was diagnosed with Granulomatosis with Polyangiitis, a rare disorder that is a form of vasculitis (ANCA-associated vasculitis), classified as an autoimmune disorder. As a complication of […]

27 February 2020

This week has been exhausting… and it is only Wednesday. I’m not complaining though, because today was a good news day. I wasn’t sure what to expect as we headed down I-15 to Salt Lake City on our way to visit one of my ENTs to see about my sinuses and ears in relation to […]

13 February 2020

Waking up from anaesthesia wasn’t as glamorous or fun as I was hoping it would be. I didn’t really know what to expect from this procedure; I was under 10 the last time I had a major surgery, so this was almost a new experience for me.

30 January 2020

Yesterday Justin took me to my first appointment with two of the specialists at the University of Utah that I am seeing for my GPA. This appointment was for my subglottic stenosis, and we didn’t know what to expect, but we are more comfortable and more informed with my current status and treatment plan.   […]

16 January 2020

When I was in my mid to late ’20s, I started experiencing significant sinus congestion, pain, constant sinus infections, headaches, and bloody noses. I saw a few different ENT’s, was put on antibiotics, recommended alkalol (a nasal rinse), and in 2017 surgery to correct a slightly deviated septum. I decided against the surgery, and time […]

6 December 2019

Some good news! My recent urinalysis and blood work on my kidneys show that so far, they are in the clear. For now, it seems my GPA is showing up only in my nose, sinuses, trachea, and ears. My lungs, for the most part, also looked good. Doctor P. scheduled a few biopsies to be […]

3 November 2019

I’m beginning to feel the seriousness of my diagnosis, Granulomatosis with Polyangiitis (GPA). In the last few days, I was unsure of how I was feeling and was trying to process everything. But the weight of it all felt like it might crush me… I have the urge to run, burn some energy, just to […]

21 October 2019

Wednesday, October 16th, Dr. P called me to let me know that my blood tests came back ANCA positive. I have been diagnosed with Granulomatosis with Polyangiitis (GPA), formerly named Wegener’s after a Nazi, so it’s not referred to by that name anymore. GPA is a rare, potentially life-threatening, auto-immune disease where your small and […]

17 October 2019