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Dayna Fladhammer

Dayna Fladhammer is a former junior high school teacher, the mom of three children with Primary Immune Deficiency, and author of My IVIG Book Kit with her son, Charlie.

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How can I get in touch with other families in my area?

A great question. Getting in touch with other families can be beneficial for both parents and children. First, register with the Immune Deficiency Foundation (IDF). They have a volunteer peer support network. Ask to be connected to a volunteer in your area. Registering with the IDF will also help you get on the mailing list for events in your area and large national events. Then the big step is – attend the events and no matter how overwhelming it is, TALK! Connect yourself to others!

Secondly, don't rule out your child (or children's) medical team. Let it be known to your immunologist, pediatrician or infusion nurse that you would like to be connected with others and that you're willing to have your name and number be given out to other families. Be friendly with the staff and other patients. We've met four families at our infusion clinic who live in our city.

Third, consider joining an internet support group. There is an active parenting forum on YAHOO! Many families end up being closer than you think. Sometimes even sharing your doctor.

Finally, be open with others about your child's condition. You never know where you might find other patients - we've met them at parks and in our schools.

The PI Panel cannot respond to questions about individual medical cases, provide second
opinions or make specific recommendations regarding therapy. The information our experts
provide is from their own experiences. Always seek the advice of your own physician or other
qualified healthcare professional regarding any medical condition. We will do our best to
address as many questions as possible. We will not publish the names of any patients,
physicians, or therapies.