Primary Immunodeficiency Support: Where To Find Help

Whether it’s you or a loved one, getting a new diagnosis can be a lot to handle. Learning you have a primary immunodeficiency (PI) may leave you feeling a bit lost. This condition means the immune system is weakened or doesn’t work properly, making it harder for your body to fight infections. Having people to lean on can help you work through these emotions. Luckily, there are many places you can turn to for support after being diagnosed with PI.

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Several organizations offer services to people living with PI. Patient advocacy groups can help connect you with others who are living with PI via peer support groups or one-on-one interactions. These connections can help improve your quality of life by allowing you space to process your emotions while helping you feel less alone and overwhelmed. In addition, they can help connect you with important resources, such as mental health support and educational materials.

What Is Primary Immunodeficiency?

PI is an umbrella term used to describe different disorders of the immune system. These conditions prevent the body from protecting itself properly from germs and infection. PI conditions are rare and affect about 1 in 1,200 to 1 in 2,000 people. They’re sometimes called inborn errors of immunity.

Scientists know of more than 500 PI diseases. Most are caused by inherited genetic mutations — changes in the genes passed down from one or both parents. These mutations affect how certain parts of the immune system work. Some types of PI are severe, and others are mild and may not be found until later in life.

Your immune system is in charge of protecting you from infections. Some people living with PI have immune systems that don’t work as well as they should. Others with PI may be born without essential immune defenses, meaning they’re missing key parts of the system that fight off germs.

People with PI conditions are more likely to develop infections. But having PI doesn’t just mean you can get infections more often. In addition, people living with PI may have:

• Severe infections
• Hard-to-treat infections
• Infections caused by germs that usually don’t make healthy people sick

The Importance of Support

If you or a loved one has frequent, severe, or hard-to-treat infections, you’ll likely see your healthcare provider often for medical care. However, it can take a long time to receive a PI diagnosis. Getting the right diagnosis can take nine to 15 years after symptoms start. Combined with being sick often, this delay in diagnosis can take a toll on your mental health and quality of life.

When you’re diagnosed with a type of PI, organizations like the Immune Deficiency Foundation (IDF) can help in many ways. These organizations can give you information about your condition and connect you with others who share your journey. They can also advise you on how to manage challenges, such as:

• Navigating healthcare and insurance systems
• Evaluating whether you qualify for disability with PI
• Improving and managing your mental health
• Advocating for yourself at work or for your child at school
• Getting through periods of infectious disease in your community, such as flu season
• Staying healthy while traveling

Where To Find Support

Living with a long-term condition can be hard. The good news is you don’t have to manage alone. You can find support for yourself or someone you love through several channels. Below are some of the main ways people with PI can get support and where to access it.

Peer Support

The IDF offers different ways to connect with others who can relate to your experience with PI. One way to connect is through the organization’s one-on-one peer support program. This program gives you the chance to talk with someone who truly understands your situation because of personal experience. Your volunteer can be someone to lean on and can share information about resources in your area. To be matched with a volunteer, you can visit the IDF website or call 410-321-6647.

You can also join support groups facilitated by the IDF. The Get Connected program offers people with PI the chance to connect online or in person with others who understand the unique challenges of living with a PI condition. In addition to group chats, the program raises awareness of the rare diseases through in-person events, such as the 2025 Walk for PI.

Advocacy Groups

The Jeffrey Modell Foundation (JMF) is a global nonprofit that works to raise awareness of primary immune deficiencies among the public and healthcare professionals. The organization aims to help people with PI get diagnosed and treated sooner. If you’ve been diagnosed with PI, JMF can help connect you with an expert immunologist (doctor who specializes in disorders of the immune system) to help guide your care. They also offer educational materials and connect people with PI through their social media channels.

Other nonprofits working to raise awareness of PI include the International Patient Organisation for Primary Immunodeficiencies and the Foundation for Primary Immunodeficiency Diseases.

Online Communities

You can also turn to online communities, such as myPIteam or Facebook groups, for support as you navigate life with PI. These forums offer the opportunity to connect with many people across the world who share your diagnosis. Members can use these sites to share their stories, get advice, and make meaningful connections with others. Joining an online community can help you feel less isolated and more supported in your journey with PI.

Mental Health Resources

The frequent illnesses and disruptions to daily life that come with living with PI can affect your mental as well as physical health. Connecting with mental health resources is especially important if anxiety or depression is disrupting your daily life or making you think about harming yourself or others.

To find a mental health professional near you that can help you manage your mental load, the IDF recommends using the Psychology Today search tool. You can also use resources provided by other mental health organizations, such as the Substance Abuse and Mental Health Services Administration, to find trusted providers.

Caregivers of children or others with PI can download the IDF’s Caregiver Compassion & Connection Guide for tips on how to maintain their mental well-being while caring for others.

Talk to Your Doctor

If you’d like help navigating life with PI, start by talking to your doctor. They can point you toward trustworthy sources of information to help you learn more about your diagnosis and what to expect moving forward. Your provider may also know of resources in your area. Many kinds of support are available locally and virtually to guide you in your journey with PI.

Find Your Team

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

Have you found resources that help you navigate life with PI? What tips would you share with others living with PI who are looking for support? Share your experience in the comments below.