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 […]
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.
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 […]
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 […]
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 […]
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 […]
Dr. P finally called he confirmed that my trachea is in fact narrowing and ordered the following blood tests: Complete Blood Count (CBC with auto differential) Comprehensive Metabolic Panel (Blood Sugar, Liver, Kidney, Muscle, Heart function). Antineutrophil Cytoplasmic Antibodies (ANCA, MPO, PR3) – [ANCA testing] detects and measures the amount of Antineutrophil Cytoplasmic Antibodies in […]