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.
A newly created SCID Compass video explores how a family copes with the days and months after a marrow transplant as they wait for their child’s body to accept the new donor cells.
The video, entitled “Coping with Post-Treatment,” is the fourth in a series created by SCID Compass partner Genetic Alliance Expecting Health. The series is designed to provide a brief overview of the challenges families face as they navigate each step of the SCID journey. Each animated video is about two minutes long and features the Fishers, a fictional family with son Liam who has SCID.
“Coping with Post-Treatment” follows Liam as he recovers from a bone marrow transplant, the standard treatment for SCID. The video emphasizes how the family should concentrate on developing a routine and stay in close contact with each other, as well as seek external support.
As they navigate post-treatment, Mom stays in the hospital with Liam, while Dad and Liam’s sister stay at home. Mom makes sure to eat healthily and spend time with Liam during play and naptime. Dad takes care of Liam’s sister and goes to work, while Liam’s sister attends school.
The family stays in touch daily through video chat, and mom finds additional support through a hospital social worker.
The video also touches on how Mom and Liam transition to a nearby patient residence when Liam is strong enough, allowing for easy access to regular care for Liam.
Click here to watch “Coping with Post-Treatment.”
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