The more you understand about primary immunodeficiency (PI), the better you can live with the disease or support others in your life with PI. Learn more about PI, including the various diagnoses and treatment options.
Living with primary immunodeficiency (PI) can be challenging, but you’re not alone—many people with PI lead full and active lives. With the right support and resources, you can, too.
Be a hero for those with PI. Change lives by promoting primary immunodeficiency (PI) awareness and taking action in your community through advocacy, donating, volunteering, or fundraising.
Whether you’re a clinician, researcher, or an individual with primary immunodeficiency (PI), IDF has resources to help you advance the field. Get details on surveys, grants, and clinical trials.
Like all of us managing life during the pandemic, Becky Wang finds herself and her family isolated from loved ones and the world at large. She also understands what it’s like to be part of the PI community and the added stress that can bring in these unsettling days. Becky’s 16-year-old son has a PI.
Still, the licensed professional counselor is doing her best to combat the loneliness and even make connections with others stronger. Recently, IDF offered an educational forum designed specifically for Get Connected Group participants to address some of the challenges touched upon during those meetings. At an IDF forum on Aug. 22, entitled, “Fostering Creative Connections in Challenging Times,” Becky shared strategies with Get Connected Groups that we all can use to uplift ourselves and those around us.
During her presentation, Becky aimed to teach the community self-care strategies, share strategies on how to cope with isolation, and provide creative and fun ways to get and stay connected.
Pursuing exercise, practicing meditation, staying hydrated, eating well, and getting adequate rest are ways that we can care for ourselves daily.
“All of these things are not rocket science, by any means, but when it comes to self-care many of us don’t give ourselves the attention we need, probably because we’re busy caring for other people,” said Becky.
Becky described how practicing mindful meditation each day helps keep a person calm and focused, even during difficult times. Meditation approaches include:
Formal meditation can be accessed through platforms like YouTube or meditation podcasts, and even three minutes a day yields results of calmness.
Keeping up connections with nature, communities, and culture is also crucial to keep a positive frame of mind.
Becky recommends going outside for a few minutes to boost Vitamin D, and to listen to the sounds of the wind, touch the grass, or feel the bark on a tree.
Staying connected to your community of family and friends is critical right now and possible through apps like Zoom or FaceTime. Play games together, or cook together. Read a story to a child. Watch a movie together.
You can virtually connect to culture by listening to an orchestra, watching a Broadway play, or taking a tour of a location in the world you’ve always wanted to go. Or you could take a class to learn photography or a new language. “There are so many virtual things you can do, and although it’s not exactly the same, it does help you feel like you’re still connecting in different places,” said Becky.
“In some ways, the pandemic has afforded us some more time, and so I think it’s nice to take that time and try to help myself grow personally or professionally. That always makes me feel better.”
Watch the full presentation of “Fostering Creative Connections in Challenging Times” here.
Receive news and helpful resources to your cell phone or inbox. You can change or cancel your subscription at any time.
The Immune Deficiency Foundation improves the diagnosis, treatment, and quality of life for every person affected by primary immunodeficiency.
We foster a community that is connected, engaged, and empowered through advocacy, education, and research.
Combined Charity Campaign | CFC# 66309