Finding Community With Primary Immunodeficiency (PIDD)

Primary immunodeficiency (PIDD) — a group of genetic conditions that keep your immune system from working like it should — can impact your life in many ways. You might get sick more often or more severely than others do. Or you might get sick with things others don’t usually get.

But it’s not just about your physical health. PIDD might take a toll on your mental and emotional well-being, and your social life, too. Finding a community — with others who have PIDD and people you’re around every day — can help you manage it.

Seeking community

It might be tough for others to understand the impact PIDD has on your life. Even if you have supportive family and friends, it can be helpful to talk to people who understand what your daily life and treatments are like. Online groups, national organizations and your healthcare provider are good places to start when seeking support.

They can often connect you to one-on-one conversations with peers, support groups and resources from healthcare professionals. They might also be able to help you navigate your treatment options or financial considerations. You might even find it rewarding to volunteer and get involved in the PIDD community. Sharing your experiences with others can help them supported and understood.

Should I share my diagnosis?

Some people find it comforting for their close family and friends to know their diagnosis. It might help your loved ones understand any extra precautions you might need to take, or days that you might not have the energy to socialize. Often, friends and family want to know how they can help and support you. If you don’t know where to start, sharing information from trusted organizations or stories and videos of others with PIDD might help.

If your child misses school often or can’t fully participate in activities, it can be helpful for their teachers to understand their diagnosis. Special accommodations might be available at work or school if you need them.

But medical information is very personal. It’s completely up to you whether you feel comfortable sharing your diagnosis with family, friends, school or work. You should make the decision that’s best for you.

It can get better

Many people with PIDD say they feel uncertainty and fear when they’re first diagnosed, or when their child is diagnosed. But they also note that these overwhelming feelings don’t last forever.

Getting a diagnosis and starting treatment can be a turning point. It doesn’t happen overnight. But as treatments become routine and you learn more about managing PIDD, you start to feel better and look towards the future. Both kids and adults with PIDD can lead active lives.

There are many different kinds of primary immunodeficiencies. You can work together with your care team to make a plan that works for you. Don’t hesitate to ask about any concerns.