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A Family Affair: One Family’s Journey with Severe Combined Immunodeficiency (SCID)

Severe Combined Immunodeficiency (SCID) is a potentially fatal type of primary immunodeficiency disease (PI). This condition is generally considered to be one of the most serious types of PI. Today, however, early diagnosis of SCID can make possible lifesaving interventions.

Join the Immune Deficiency Foundation (IDF) as we speak with Nicole Locastro, a mother of a child diagnosed with SCID through newborn screening. Nicole offers us some thoughtful insights into the family experience and some strategies her family employed along the way.

Helping Families Take Charge of Adenosine Deaminase (ADA)-Severe Combined Immunodeficiency (SCID)

Although rare, Adenosine Deaminase (ADA)-Severe Combined Immunodeficiency (SCID) is one of the most serious primary immunodeficiency diseases (PI). Children with ADA-SCID lack immune protection against bacteria, viruses, and fungi and are prone to repeated and persistent infections. Fortunately, effective treatments exist that can treat the disorder.

Medical vs. Pharmacy Benefits: The Differences in How Immunoglobulin (Ig) Therapy Is Covered

Immunoglobulin (Ig) replacement therapy is a lifesaving, lifelong treatment for many people with primary immunodeficiency diseases (PI), specifically those who are antibody deficient. For those who rely on this treatment, you need to know how your therapy is covered under your insurance. Is it part of your pharmacy benefit or your medical benefit? This is always important to understand, but it’s especially critical to know when there are supply issues that may prevent you from receiving your normal vial sizes for your dose.

There Is Still Time to Give in 2018!

Looking back over the year has reminded us what we love most about IDF—the community we serve, the work that we do and the incredibly dedicated supporters who make that work possible. If you haven’t yet, please consider donating to IDF before the end of the year.

Click here to donate.

This article originally appeared in the IDF monthly e-newsletter, Primary Immune Tribune. Click here to subscribe.

 

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