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Seeking Support in Our Community

Amber Steinberg is an active member of the PI community. She is a single mother raising her son, River, who is living with Selective IgA Deficiency. While raising a child with PI is a challenge in itself, it is even more of a challenge for Amber who feels that she doesn’t have much of a support system since River “looks healthy” to others. Not everyone understands what a PI is, nor what it looks like.

Amber advises that other parents raising a child with PI should seek support from IDF. We have an array of support programs to help our community. These programs include:

Pictured: River Steinberg

It is one of Amber’s goals to raise as much PI awareness as she can. After seeing doctor after doctor, landing on an immunologist that finally listened and cared was such a relief, and finding a support system with IDF has lifted so much confusion. To learn more about River, you can visit his Facebook page: River’s Hope.

Would you like to share your story on the IDF blog? Contact us: info@primaryimmune.org.

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