World Primary Immunodeficiency (PI) Week is April 22-29

What is primary immunodeficiency? The Mayo Clinic offers this definition:

“PI weakens the immune system and as a result infections or other health problems may occur more often. People with PI are sometimes born without certain immune defenses or may have a malfunctioning immune system. Either scenario invites germs that will cause infections.”

Over 300 types of PI have been identified. Some types are mild and may not be diagnosed until the person reaches adulthood. But there are other more severe types that are discovered almost immediately after the child is born. Unlike many thus far incurable disorders, there are treatments available to increase the efficacy of the immune system for PI patients. Research is ongoing.

How to Tell if it is PI

PI infections are more difficult to treat in the absence of a healthy immune system. Perhaps the most common sign of PI is having frequent infections. The other scenario is having an infection (opportunistic infection) that does not normally invade a person with a healthy immune system. Therefore, if you can help the PI community that will ensure that this research will continue, and that in general, patients’ quality of life will improve.

How Can We Help the Global Campaign?

The international World PI Week offers a wealth of opportunities to join others around the globe in furtherance of research and spreading information.

The easiest and most obvious tool is social media. Another simple method is “spreading the word” either in person, via text, email, or your favorite form of communication.

Germany Set a Memorable Example in 2023

The German DSAI held an education day for patients for purposes of information and to also empower them as they go about their daily lives. In addition, the DSAI held various campaigns on social media about PI’s warning signs along with related topics.

Patient/plasma donor meetings were welcomed by everyone. It was an opportunity for people with PI to connect with plasma donors and gain understanding. It is a major undertaking, but by spreading the word, so much can be accomplished.

If you visit the World PI Week website, you will find accurate data that you can use to inform your circle of influence. You can relay the World PI week videos and newest podcasts. The kick-off video will be released on April 21st along with “roadshow videos.”

More April 21st Videos

Clinician/patient coffee-talk will be recording live shows on the 21st. Use the hashtag #WorldPIWeek.
You are encouraged to submit your own photo to show your support. Send it to [email protected] and it will be relayed to its channels. Your thoughts on the subject of how data can change lives are welcome together, if you wish, with your photo by way of the quote card generator.

Participate in a Radio or TV Interview

If you are a patient, healthcare professional, or someone with expertise in primary immunodeficiency, your insight would be very much appreciated and encourage others to offer their views. A template has been provided on the website as an aid to anyone wishing to contact their local or national representative and invite them to recognize World PI Week.

Rose Duesterwald

Rose Duesterwald

Rose became acquainted with Patient Worthy after her husband was diagnosed with Acute Myeloid Leukemia (AML) six years ago. During this period of partial remission, Rose researched investigational drugs to be prepared in the event of a relapse. Her husband died February 12, 2021 with a rare and unexplained occurrence of liver cancer possibly unrelated to AML.

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