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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When a family leaves the hospital after their baby receives treatment for severe combined immunodeficiency (SCID), it can be an apprehensive, yet hopeful time in their lives. Parents worry about caring for their baby away from the hospital setting, but also feel relieved and excited to finally be bringing their baby home.
Though treatment for SCID aims to provide the baby with a functioning immune system, the baby still remains vulnerable to infection when released from the hospital. Families must practice isolation until cleared by their doctor and adhere to firm hygiene routines to keep their baby safe. In addition, some babies require medication to continue their recovery.
A new video, entitled “Returning Home,” describes the experience of families leaving the hospital and offers tips on how to make the transition to home less stressful. Genetic Alliance Expecting Health created the video, which is the second installment in a series of animated videos planned for the initiative.
In "Returning Home," parents are advised to create a list of questions for the doctors such as:
The video also recommends preparing the home by cleaning it thoroughly and stresses the importance of handwashing before touching the baby, avoiding public places, and limiting visitors.
Click here to watch the video.
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