We are fortunate there is a safe and effective vaccine to protect us from the flu. The Immune Deficiency Foundation (IDF) represents some 250,000 people in the U.S. with primary immunodeficiency diseases (PI), rare but serious conditions in which the immune system is absent or functions improperly. Our population, along with the elderly, infants, those on chemotherapy and those for whom vaccines don't work, are all at a higher risk of severe illness and even death if they get the flu.
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Alabama has officially begun screening newborns for Severe Combined Immunodeficiency (SCID), making it the 48th state to screen for this life-threatening disorder, one of the most severe forms of primary immunodeficiency diseases (PI).
Infants affected by SCID lack T cells, the white blood cells that help resist infections due to a wide array of viruses, bacteria and fungi. Babies with SCID appear healthy at birth, but without early treatment, most often by hematopoietic stem cell transplant from a healthy donor, these infants cannot survive.
Stef Dunphy grew up with a father who lived with x-linked agammaglobulinemia, a primary immunodeficiency disease (PI). Sadly her father, David, passed away in 2006, and Stef continues to honor him in many facets of her life.
This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.
Download the debut episode of the new podcast from the Immune Deficiency Foundation (IDF), Primary Immunodeficiency Q&A, now available on iTunes.
Each episode will feature a special guest, from physicians and nurses to life management experts and patients with primary immunodeficiency diseases (PI). They will provide listeners with helpful information about living with PI, a group of more than 350 rare, chronic diseases affecting more than 250,000 in the U.S.
How It’s Affecting You
If you receive co-pay assistance from the manufacturer of your immunoglobulin (Ig) replacement therapy or other necessary treatments, and those payments no longer count towards your deductible or out-of-pocket maximum, we have some important information for you.
Kim DiGangi experienced infections her entire life. She spent many years on antibiotics but never connected the dots. When Kim was finally told she may have a primary immunodeficiency disease (PI), she was in complete denial. She sought out second, third, and fourth opinions. Finally, she found a doctor that did not feel she had a PI and sided with him. Several years later, the complications continued, and she resigned herself to her diagnosis of Common Variable Immune Deficiency (CVID).
Have you been hearing from your specialty pharmacy that they may not be able to cover your subcutaneous immunoglobulin replacement therapy (SCIG) as a Part B Medicare benefit?