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.
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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.
Shortly after doctors diagnosed Rachel Homer’s infant daughter Lameria Gishie with severe combined immunodeficiency in July 2019, mother and baby flew over 800 miles from their home on the Navajo Nation reservation in Arizona to the University of California San Francisco Medical Center for treatment.
The tremendous distance prevented family members from helping as caregivers and providing in-person love and support.
“We were able to have visitors. But being so far from home, I rarely had visitors at the hospital,” said Rachel. “It was very hard not having my husband or my son there – and my mom. She’s also a big part of my life.”
Separated from her family by the many miles, Rachel also experienced isolation on a different level. Doctors placed Lameria in isolation at the hospital to reduce the chances of her developing life-threatening infections.
Isolation protocol calls for restrictions on visitors, strict handwashing procedures, the wearing of protective equipment like masks, gowns, and gloves, and disinfecting of any outside items like clothing or toys.
As her sole caretaker, Rachel stayed with her daughter in isolation, only leaving the room for a few minutes each day when staff provided her with breaks.
Rachel recently sat down with IDF’s SCID Compass program and discussed how she and her family coped with the isolation measures - both at the hospital and at home, as the pandemic unfolded.
Click here to listen to the podcast, “How One Family Navigates Isolation for SCID During COVID.”
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