piawareness

Create a new post for topic
Join the Conversation on
70 people
0 stories
5 posts
Explore Our Newsletters
What's New in
All
Stories
Posts
Videos
Latest
Trending
Post
See full photo

being chronically ill is a full time job.

I have been chronically ill my entire life. I don’t remember a time when I wasn’t battling some kind of infection. I was born with a rare disease known as primary immunodeficiency or PI for short. More specifically CVID or common variable immune deficiency which usually affects children. I wasn’t diagnose until the age of 28! I receive monthly plasma infusions of Gammagard through a chest port. It helps to maintain my IgG levels since I cannot produce my own antibodies. Basically it just means I’m prone to infections like pneumonia. #piawareness #Showyourstripes #zebrastrong #DonatePlasma #RareDisease #RareDiseaseMonth #InvisibleIllness

(edited)
Most common user reactionsMost common user reactions 3 reactions 1 comment
Post

Zebra Strong!

Common variable immune deficiency patient going on 8yrs. now. I wasn’t diagnosed until the age of 28 due to my own insistence after battling a lifetime of illness & infections. We are #zebrastrong ! I’m so happy to support #RareDiseaseDay ! @IDFCommunity #piawareness #CommonVariableImmuneDeficiency

Most common user reactionsMost common user reactions 3 reactions
Post
See full photo

Mighty Mighty Mason’s Rare Disease Day Blood Drive

My 7 year old zebra hosts a blood drive every February to raise awareness of CVID and Rare Disease Day. He had a great turnout with 48 units of blood collected which helped over 120 patients. #mightymightymason #piawareness #Needlewarrior #Immunodeficienciesstink #Hesworthacure #InvisibleIllness
#RareAndMighty

2 comments