Trying to explain that you have a primary immunodeficiency disease (PI) can be complicated, especially when most people haven’t ever heard of your disease before. PI awareness increases the understanding and recognition of these chronic, rare diseases that can make a huge difference in the lives of those who are living with PI. While people may not learn overnight what PI is, promoting awareness of PI is important to continue throughout the year.
Now that National PI Awareness Month is coming to an end, we have a few ideas on how you can continue promoting awareness for many more months to come. First, we want you to ask yourself the question: What does raising PI awareness mean to me? Once you figure out exactly what that means to you, planning your awareness initiatives will easily fall into place.
- Post on social media (and use hashtags #piawareness and #livingwithPI): Share your personal story—when you were diagnosed and what that has meant for you. Although it may be difficult, it can inspire others and help people understand what living with PI is like. When you post about PI on social media, be sure to use the following hashtags: #piawareness and #livingwithpi.
- Spread the word & share IDF resources: IDF has a wide variety of resources available to the PI community, and we want you to take advantage of that! The ‘Is it just an infection?’ poster is ideal to post up in any community location, like your local library, grocery store, school, community center or anywhere that can reach the general public. By doing so, you can potentially reach those who have been living with PI and haven’t known. The ‘Is it just an infection?’ poster is designed so people who have symptoms of PI will see it and think, “Yes, this is what I’m going through. Maybe I should ask my doctor to check for a primary immunodeficiency disease.”
- Create an IDF Walk for PI team: IDF Walk for PI 2018 registration has recently opened! Create your team and start planning your day. Walks might not start until later this fall, but your team is much more than just a team—they are your support network. Your team can help you advocate and promote awareness of PI!
- Show your stripes & wear zebra print: Own your stripes and accessorize with all things zebra print! When people ask why you are wearing zebra, tell them! And don’t forget to share your photos using social media and by using the #THINKZEBRA! hashtag! Who knows, you may just be featured on IDF social media.
- Join us at an IDF event (or create your own awareness event!): While many of those at IDF events will already know what PI is, it’s a great place to stay informed, connect with other zebras and get materials to share with others.
Thank you for joining along with us for PI Awareness Month!