World PI Week 2024: Spreading Awareness For Primary Immunodeficiency

April 22-28

April 22 – 28 is World PI Week 2024. So, what does that entail? According to awarenessdays.com, World PI Week is “a global campaign which aims to raise awareness and improve diagnosis and treatment of primary immunodeficiencies (PI).”

Primary Immunodeficiency is a group of rare, genetic disorders that cause the immune system to malfunction, making it harder to fight infections. I have Common Variable Immunodeficiency (CVID), which is a type of PI. In my case, I don’t have enough antibodies to fight off infections, which makes me very susceptible to illness. I am extremely lucky that I have been able to get SCIg treatment for almost five years.

SCIg helps to replace the antibodies that I am lacking, which builds my immunity and allows me to live a (somewhat) normal life. When I was diagnosed, I was extremely scared of the future. I didn’t want to have to rely on treatment for the rest of my life. But, as the years have gone by, I have become increasingly more comfortable with it. It is such a blessing that people donate life-saving plasma.

If you have PI, you can share your story in The World PI Week Story Book. This is a campaign that allows people to share their journeys with PI, including diagnosis, treatment, and how long they have been battling the disease.

Overall, this week is a great opportunity for patients to feel connected, raise awareness, and seek access to resources to learn more about their disease and treatment. It is a great way to come together and feel a little less alone.

If you want to learn more about the week and get involved, go to worldpiweek.org.

Listen to my podcast feature on The Trusted Friend by Lisa Helton

I recently had the pleasure of being a guest on Lisa Helton’s Podcast, The Trusted Friend. My episode is called “Life Interrupted.” I dive into my Primary Immunodeficiency story and discuss the importance of plasma donation!

I am so happy that I have gotten the chance to share about my life with chronic illness. If you are recently diagnosed, I hope that this may bring you comfort and show you that it gets better.

This is an amazing podcast, so you should definitely give it a listen! You can watch the full episode on Youtube here.

This week is an opportunity to celebrate your strength!

If you or a loved one has a primary immunodeficiency, you know how challenging it can be. It is truly a roller coaster ride that you can never get off of. It takes a special kind of strength to endure these battles, so you should be extremely proud of yourself.

If you feel comfortable, tell your story! It may seem like people don’t want to hear it, but I promise that is not true. When I started this website, I was still uncomfortable with telling my story. I thought that people might not care at all. I worried about judgement or misconceptions about this disease. But, I have been pleasantly surprised about the overwhelming support and community that has come from starting this website.

If you feel compelled to share your story, I would love to have you write a guest post! Recently, I had a guest post by Kendal Phinney and I really enjoyed reading it and learning about her journey. It is a great opportunity to transfer your feelings to written word. If you’re interested, send an email to contact@aubreywithgrace.com.