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.
Read more about Dayna Fladhammer
What organizations can provide us with peer support and education?
Support and education for Primary Immunodeficiency Diseases is growing by leaps and bounds! There are a number of different places to turn, including:
The Jeffery Modell Foundation (JMF)
The Immune Deficiency Foundation (IDF)
Michigan Immune Deficiency Foundation
International Patient Organization for Primary Immunodeficiency (IPOPI)
SCIDS Foundation
There are also internet support groups, web chat groups and internet chat boards. IDF, the Modell Foundation, and IPOPI all have their own web boards. However, the most active ones I've found are not associated with any organization. They are founded by patients themselves. Look on Yahoo! groups under Primary Immunodeficiency and Primary Immune Deficiency Disease.
Finally, on the education front, welcome to the information age! There is more information out there then any one person could possibly digest. On this website, you can order:
• A fabulous tool from Baxter called the Educational Resource Kit for Newly Diagnosed Patients, which includes an overview of the immune system on a CD-ROM. This kit will not only be useful for the newly diagnosed, but also for teachers, grandparents, and childcare providers.
• Immune System Flip Chart – A great portable way to learn about the immune system, or teach others about it.
• Charlie's IVIG Book Kit – A book that lets kids see another child getting an infusion, and a kit to help them make their own books.
The Immune Deficiency Foundation has come out with some great publications in the past few years. Some to consider ordering are:
• The Patient and Family Handbook – Considered the "Bible" of the immune community, this publication has simple explanations for very complex issues such as explaining the major immune disorders and treatment options.
• A Guide For School Personnel – Written in response to the numerous issues parents have encountered within the school system, this book provides an overview of immune diseases, and explains possible complications in the school setting. Further, it explains for parents the basic legal rights concerning education including 504's and IEP's.
• Clinical Care Guidelines – This publication is especially helpful if you're one of the many patients seeing a physician who has treated very few PI patients.
• How To Keep An Infusion Log – One of the most important things we as consumers of IVIG can do is maintain an infusion log. It's important to know the brand name, dose and lot number of every infusion your child gets. This publication can help you understand how to do this, and why it's important.
The Modell Foundation offers a few publications, including a poster and some information for the school nurse as well. Consider downloading, or ordering the three posters offered by JMF on their resource site www.info4pi.org:
• 10 Warning Signs of a Primary Immune Deficiency Disease
• The Steps to Immune System Testing
• The Immune System Overview
Finally, consider other outside sources, such as the National Institute of Health, Web MD, and academic textbooks.
A suggestion – when you order publications free of charge, order an extra copy in case you run across someone else who might need the information, such as a teacher or an extended family member.
Read more Q & A on family living
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.
