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, … [Read more...] about I Am Rare: Rare Disease Day 2020 – 29 February
My Nightmare — and a Turning Point For a few years now, I would say approximately 3-4, I have had issues breathing. It started slow, mostly when I was hiking, biking, snowmobiling… but in 2019 … [Read more...] about A Breath of Fresh Life
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 … [Read more...] about On Moving Forward & Waiting.
Photo by Varshesh Joshi on Unsplash 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 … [Read more...] about On biopsies, waiting, and taking a seabatical.
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 … [Read more...] about Feeling the weight of diagnosis.
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 … [Read more...] about Diagnosed; my new journey with Granulomatosis with Polyangiitis