I Am Rare: Rare Disease Day 2020 – 29 February
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 my GPA I also have subglottic stenosis, also a rare disease.
I am showing my stripes and sharing the rare diseases that I have to help raise awareness and to advocate for myself and others that are living with a rare disease. Many of which there is no cure for and that go undiagnosed.
I am still learning all that I can about my rare disease diagnosis and what it means for me and my future. As I finish up my first treatments, I am in remission. I will still require ongoing medical checkups and treatment, but I hope that this will be my last update for a while and that life can get back to my new normal thanks to my care team.
Join me in raising awareness for people living with a rare disease and for their families, and care providers.
February 29, Rare Disease Day is the opportunity to advocate for all rare diseases “as a human rights priority at local, national and international level as we work towards a more inclusive society.”
#ShowYourStripes on #RareDiseaseDay
Rare is many.
Rare is over 300 million people around the world.
Rare is strong.
The rare disease community is connected across borders and diseases to raise awareness and advocate for equity.
Rare is proud.
Show your support for the rare disease community with pride! The likely truth is that you know somebody affected by a rare disease.
- Research recently published in the European Journal of Human Genetics, article authored by EURORDIS-Rare Diseases Europe, Orphanet & Orphanet Ireland “Estimating cumulative point prevalence of rare diseases: analysis of the Orphanet database”. The analysis is of rare genetic diseases and is therefore conservative as it does not include rare cancers, nor rare diseases caused by rare bacterial or viral infectious diseases or poisonings https://www.nature.com/articles/s41431-019-0508-0