Community & Resources
You're not alone in your struggle with PI. Here, you'll find links to resources, online communities, and Patient Advocates who understand what life's like living with PI.
We’re Stronger Together
If you or a loved one has been diagnosed with primary immunodeficiency (PI), you may experience a range of emotions from relief to feeling overwhelmed. The MyIgSource Patient Advocates are here to offer support and help you learn more about PI and connect to the community.
MyIgSource Advocates either have PI themselves or have a loved one with PI, so they have firsthand experience of what it’s like to live with PI and manage the condition day to day.
Enroll and Connect
When you enroll in MyIgSource, you will receive a call from a Patient Advocate who can help you learn what the program has to offer. Your Patient Advocate will also be your point of contact for everything MyIgSource.
Meet Your Patient Advocates
Dayna is the mother of four children with PI, ranging from college to elementary school, and has been an active leader in the community for years. As a former teacher, she believes in the power of education to empower people as they navigate life with PI. While leading the Patient Advocate team, Dayna is dedicated to delivering support and thoughtful guidance so the MyIgSource Patient Advocates can offer the same commitment to patients, caregivers, and their families.
For Julie, a PI diagnosis didn't mean giving up an active lifestyle. In fact, shortly after being diagnosed, she participated in her first relay event to raise awareness for PI. Now that Julie’s stepson is grown, she and her husband moved across the country to fulfill their dream of living near the mountains. This meant establishing a relationship with a new treating physician for her PI, as well as creating a completely new healthcare team, a process Julie understands can seem daunting, but is possible!
Karen was diagnosed with PI at the end of 2011, but she had been looking for an answer since 1992. As the wife of a police officer and working mother of three young adults, one a Marine and two in college, Karen knows a thing or two about managing a chronic illness while still dealing with everyday life. She understands that it is a difficult and sometimes overwhelming diagnosis, but has learned how to empower herself and is grateful to be in a position to help others learn to do the same.
Sue struggled with chronic infections for several decades before finally being diagnosed with PI in her late 50s. As a Patient Advocate, Sue encourages patients and caregivers to seek out the best possible care and to advocate for themselves. She also uses her teaching background to help people understand primary immunodeficiency and to develop better communication with their families, friends, and healthcare providers.
Scott is the father of two adult children and was diagnosed with CVID at the age of 52. As an adult diagnosed with PI after years of fighting infections which began in his childhood, Scott relates to other adults and can walk with them through their journey. He and his wife love spending time with their grandchildren and enjoying the great outdoors. A proud member of the Patient Advocate team, Scott is thrilled to work alongside members of the community and to serve with passion.
Laura and her wonderful husband are parents to two active young adults. She was diagnosed with CVID in 2017, ten years after her son received the same diagnosis. Laura believes education and empowerment are the keys to helping patients successfully navigate their PI journey, just as they navigated their son’s journey through college and recent marriage! When she finds the time for herself, she goes to her happy place at the beach.
Kris is a mother of three children with three different rare diseases. One of her daughters was diagnosed with CVID in 2012 after many years of searching for answers. As her daughter approached the transition to high school, she has worked to teach her to become an active member of her healthcare team and how to advocate for herself as she becomes more independent. Kris also has experience with navigating the educational system throughout many different ages and stages. Kris and her family lead an active lifestyle involving lots of sports and walks with their bichonpoo.
A previous middle school teacher, Renee is also the mother of an adult child. After her diagnosis several years ago, she and her husband both relied on MyIgSource for PI Education, resources, and peer-to-peer support. Renee hopes to assist others wanting to learn more about PI by sharing her own experience with a PI diagnosis in adulthood, and giving back the education she recieved. She also strives to provide support for others who are searching for answers while coping with the uncertainty of a new diagnosis.
Having been diagnosed early in life, Austen recognizes the challenges of growing up and transitioning into adulthood with PI. He does not let PI stand in the way of his passion for golf and traveling. He’s recently discovered cycling and is even training for a triathlon. Newly married, Austen can often be found in the kitchen testing new recipes alongside his wife, or on a plane off to their next adventure!
Lori brings a depth of advocacy experience to her role as Patient Advocate, having spent 10 years advocating for older adults, she shifted gears because she understands how PI Impacts the entire family. Lori’s husband was diagnosed with CVID in 2008. Through this experience, and as a mother to two children, she has vowed to offer education and support for other families . Her husband is a business owner who has learned to manage his PI while successfully pursuing his passions. As a proud Patient Advocate, Lori provides support to all impacted with PI.
Shawna is a mother of three adult children and soon-to-be grandmother of two grandsons. At only 18-months old, her daughter was diagnosed with primary immunodeficiency. This quickly taught Shawna the importance of empowering her daughter to take ownership of her health as she grew into adulthood. Shawna enjoys traveling and baking sweet treats for her family (and her team!). As a Patient Advocate, Shawna is passionate about coming alongside with her Caregivers and Patients so they never feel alone.
Xan is the mother of two adult children; her daughter was diagnosed with PI early in life. She understands the impact PI can have on a child as well as their family and has a passion for helping families and young adults navigate this journey—especially as it pertains to managing education, from pre-school through college. She also understands the unknown and how what you need during the PI journey changes with each stage of life, from the littlest preschoolers all the way up to the transitioning adult at 26. Xan LOVES Disney and anything to do with Disney.
These 3rd party online communities have been created for people living with PI to share experiences and offer support.
Immune Deficiency Foundation IDF Friends
The Immune Deficiency Foundation created IDF Friends, a private social community created exclusively for patients and family members living with PI. People living with PI can join with others in the discussion forum, group forums, and chat rooms and share experiences through forum posts, pictures, and videos.
Jeffrey Modell Foundation (JMF) Global PI Village®
The Jeffrey Modell Foundation, a global patient organization dedicated to primary immunodeficiency, has created a Global PI Village® where patients, physicians, families, and friends can visit the Internet Café to connect and share experiences at the Social Hub.
International Patient Organisation for Primary Immunodeficiencies (IPOPI) Forums
IPOPI is an organization dedicated to improving awareness and access to early diagnosis.