Primary Immunodeficiency Awareness Month: 5 Ways To Participate

Did you know that more than 500 conditions are classified as primary immunodeficiency (PI) disorders? Most are caused by genetic changes that affect how the immune system works. People diagnosed with primary immunodeficiency often have immune systems that are missing key parts or don’t work as well as they should. PI disorders are rare and lifelong. Learning more about them can help you or a loved one better manage life with the condition.

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A primary immunodeficiency disorder makes it hard for the body to fight off infections. People living with PI may get sick more often or more severely than others. In some cases, infections can become serious or even life-threatening.

Participating in Primary Immunodeficiency Awareness Month allows you to support yourself or a loved one who has a PI condition. Here’s how you can get involved.

What Is Primary Immunodeficiency Awareness Month?

Primary Immunodeficiency Awareness Month is recognized every April in the United States. Throughout the month, people strive to educate others about primary immunodeficiency.

Several patient advocacy and professional immunology organizations sponsor the event. These groups offer tools, resources, and community support for people affected by PI. Awareness Month gives people a chance to connect, share experiences, and find solutions.

Each group might highlight different topics during the month. For example, in 2022, Plasma Hero focused on the need for more plasma donations for people living with PI. Other efforts aim to help the public and medical professionals better understand PI.

Education helps doctors recognize early warning signs of PI, order the right tests, and diagnose the condition sooner. Advocacy also encourages healthcare professionals to learn about genetic testing, when to do screenings based on family history, and how newborn screening leads to early diagnosis.

It’s also important for providers to understand that people living with PI may need antibiotics more often, for longer periods, or at higher doses to better treat their infections.

Why Participate in Primary Immunodeficiency Awareness Month?

There are many reasons to take part in Primary Immunodeficiency Awareness Month. For starters, getting involved is a reminder that you or your loved one isn’t alone. Seeing people across the country working to help others understand PI can be encouraging, especially during tough times.

Participation can also help raise money for research. Fundraising supports scientists who are working to better understand the condition and find improved treatments. Every contribution matters and helps people with PI live healthier lives.

Raising awareness helps more people learn about PI, which may mean more understanding and support at work, at school, and in medical settings. Awareness can lead to earlier diagnoses, more informed doctors, and better care for people living with PI.

How To Participate in Primary Immunodeficiency Awareness Month

Ready to join in? Choose the activities that feel right for you. Some events may be organized by local groups. Your immunologist or other PI clinicians can help you get more information about these opportunities.

1. Learn More About Primary Immunodeficiency

Start by expanding your own understanding. If you’ve been diagnosed with one type of PI, learning about others can be helpful. During Primary Immunodeficiency Awareness Month, many organizations provide educational materials such as articles, guides, and fact sheets, as well as webinars and specialist-led discussions. If you’re a caregiver, learning more can help you offer more personalized care.

2. Share What You Know

Once you know more about PI, spread the word and share resources with schools, clinics, or community groups. You might also tell your own story at events or online. Putting a real face on the condition helps others understand and remember it.

3. Volunteer for Fundraising and Other Projects

PI events like walkathons or awareness drives often need volunteers. You can join an existing group or start your own. Volunteering helps raise funds for research and builds a sense of community.

If you’ve been living with PI for a while, consider offering peer support to help others with PI. This may mean joining or leading a support group, or you might meet with people who are newly diagnosed to help them navigate life with the condition.

4. Donate Plasma

Plasma donations are essential for people who rely on immunoglobulin replacement therapy. Just one person’s treatment may require up to 130 individual donations a year. That’s a lot of plasma, and there’s almost never enough. If you’re eligible, signing up to donate during Awareness Month can have a big impact.

Regular donations help even more. Many donation centers let you schedule in advance or contact you when it’s time to reschedule. This makes it easy to donate often to help people with PI feel better, fight infections, and have a better quality of life every day.

5. Share on Social Media

Talking about PI on social media can spark conversations and spread awareness without taxing your energy. Sharing your own story — or reposting helpful sources — helps others better understand what it’s like to live with PI. When they see how the condition affects someone they know, they may be more likely to invest in better awareness themselves.

The more people affected by PI use their networks to raise awareness, the more others will understand the condition, get screened, and consider supporting research.

Talk With People Who Understand

On myPIteam, people come together to learn more about life with primary immunodeficiency disorders.

Have you ever participated in Primary Immunodeficiency Awareness Month? Share your experience in the comments below.