Three stories intertwined by the power of connection.

Connection is valuable — especially for individuals with compromised immune systems, who can feel isolated and alone in their journey.

This is where the Immune Deficiency Foundation comes in as a lifeline. We are proud to offer a safe space through our range of support programs that meet the unique emotional needs and lived experiences of each individual.

Below you will meet three people who participated in these valuable programs. From Get Connected Group leader Denise to Teen Escape participants Danielle and Sophia, and peer support member Caroline, everyone deserves to feel seen, heard, and connected to someone who truly understands. 

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Get Connected Group leader, Denise.

Meet Denise, who was diagnosed with the primary immunodeficiency (PI) called common variable immunodeficiency (CVID) just after turning 60. She discovered the Immune Deficiency Foundation through an online search and shortly after attended our National Conference. "The revelation that I was not alone on this journey was reinforced. It was a place where explanations were unnecessary and support was freely offered," said Denise.

This experience inspired her to start the Nebraska Get Connected Group, which are free, peer-led virtual gatherings organized by location, diagnosis, or lifestyle. "How enriched our lives would be if we could meet with a peer support group monthly! I desire to create that place for Nebraska and the surrounding area," remarked Denise.

Teen Escape participants, Danielle and Sophia

Next, meet Danielle and her daughter Sophia, attendees of the Immune Deficiency Foundation’s Teen Escape, which are weekend getaways for parents and their teens that provide families with connection, coping mechanisms, and interactive educational sessions.

"I can honestly say the Teen Escape was one of the best trips Sophia and I have ever been on together. Sophia connected with five other teens that actually understand being sick and the huge emotional toll it takes on them," said Danielle. 

The opportunity for immunocompromised teens and their parents to connect is what makes the program so invaluable. "They understand each other in a way I cannot possibly understand. Being a teen is hard enough, add in a rare condition, it can be unbearable," observed Danielle. 

The bonds formed at the Teen Escape extend well beyond the weekend. "The teens talk regularly and have built lifelong friendships. I continue to talk to the other parents and we lean on each other. I am forever grateful," said Danielle. 

Most of all, Danielle is in awe of how the power of connection transformed her daughter and herself. "The community has been a huge part of my healing as a parent. I have watched my daughter go from sadness to encouraging others to try new things and live the best life possible. Without IDF, none of this would have happened," said Danielle.

Peer support participant, Caroline.

Finally, meet Caroline, a participant in the one-on-one peer support program, which matches a peer support volunteer which matches their unique situation. "What surprised me most was how much better I felt simply by talking with other immunocompromised people. There's something incredibly powerful about connecting with others who truly understand exactly what you’re going through," she says. 

After a lifetime of frequent infections, Caroline was diagnosed with specific antibody deficiency (SAD) at age 33. Through the Immune Deficiency Foundation, she found fellow community members who understand what it means to live with a rare condition.

"Even with the support of family and friends, it can still feel lonely at times. There’s a special and unique level of connection I’ve found within the community. I’ve also learned so much valuable information from others who share their experiences and practical tips," said Caroline.

For those interested in joining a support group but have not yet taken the leap, Caroline has some words of advice. "It’s OK to take the next step at your own pace—but don’t underestimate how meaningful it can be. Start small. Connecting with others who truly understand life with immune deficiency can be incredibly validating, and that first step can open the door to real support and connection."

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No one should feel alone on their journey, and the Immune Deficiency Foundation is proud to offer programs where participants can share their unique experiences as they relate and connect to one another. Everyone deserves support, and these key resources uplift and empower our community with an invaluable lifeline.