Primary Immune Deficiency Awareness

Primary immune deficiency warrior audrey

April 30, 2021

It’s World PI Week! This is an exciting week of advocacy for those with Primary Immune
Deficiencies! My name is Audrey, and I am a member of the Primary Immune Disease
Community.

250,000 people in America have been diagnosed with over 400 rare PI diseases (Immune
Defective Foundation). I have Common Variable Immune Deficiency which means I don’t make
enough white blood cells. Don’t let the word common fool you; it’s still a rare disease but this is
the most common of the PI diseases. I am prone to getting infections especially in my sinuses
and respiratory system.

While I have had symptoms my entire life, in 2013 an abscessed tooth led to my immune
system trying to shut down my body, and everything about my life changed. I could barely walk,
I had no energy. I suffered from brain fog and memory issues. My fine motor skills were also
affected. My immune disorder was giving me auto-immune side effects. I was lucky though; I
was diagnosed in 2 years and that’s because I knew someone on the board at the University of
Alabama Birmingham. On average it takes people 15 years to be diagnosed which blows my
mind (myigsource.com).

My diagnosis changed my life. I remember crying when I got the call. I was crying happy and
sad tears. I had answers and that was amazing but I would have to start a treatment that would
last me the rest of my life. At 32 years old, it seemed like forever.
For almost six years, I have been receiving IVIG therapy. My medication is made from human
plasma. Plasma that must be donated and this something you can do to directly help me with
my disability. Donors are the heartbeat of treatment, and I am so thankful to each person who
takes the time to donate,

Now, I can hold down a job with only a few accommodations. I can walk on my own as long as
I’m not on my feet all day. My brain fog is minimal allowing me to pay attention to the grant work
I do professionally. This treatment has changed my life for the better. I am lucky enough to get
my therapy at home. This makes the chance of infections from others less and allows me to be
comfortable as well as not have to drive after having mainline Benadryl.
Thanks to plasma donors and doctors who took the time to look for rare, my life has changed for
the better! I am not ashamed of my disability and have no problem discussing it with other
people, especially doctors and their staff. They are learning that when you hear hoof beets, you
should look into to zebra as well. Because when doctors just looked for horses no one could
help me.

This is my PI story. It is unique to me as PI doesn’t effect people uniformly. We each have our
own journey. If you know someone with PI reach out and hear their story. Between learning
about the illness and donating plasma, you make the world a little better place for us.
Want more info? Check out the primaryimmune.org and myigsource.com.

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