Educating others about the autoinflammatory condition you and/or your child have to live with greatly helps others understand you and allows them to better help you. These are some good articles, videos, and other resources that can be shared with family and friends, or teachers, to help with that endeavor.
This article covers the basics of what a fever syndrome is. Symptoms, types, and diagnosing are covered.
Help for patients dealing with a fever syndrome when they are confronted with unsolicited or incorrect advice, comments, or even criticism.
This article clearly explains how the symptoms of autoinflammatory diseases are not contagious.
This is a good article to give to teachers and close family members to help understand how the inflammation from these diseases may also affect the brain and behavior.
Autoinflammatory Disease Information Cards
These business-sized cards provide basic information about each condition. Patients use these to give to friends, family, doctors, nurses, teachers, and others as an easy way to simply explain theirs or their child’s condition. Cards are available for FMF, HIDS, CAPS, PFAPA, DIRA, CRMO, Blau, SURFS, TRAPS, and others. Click here to request SAID information cards. Be sure to include which disease(s) you need. If your diagnosis is not yet certain, then the SURFS card will work for you.
Comprehensive, yet easy to understand information on the CAPS diseases, FCAS, MWS, and NOMID.
This is a great simple video made by Novartis that explains CAPS, TRAPS, FMF, HIDS, PAPA, and Blau syndrome. It covers the basic symptoms, how it affects a person’s life, and diagnosing.
In this video autoinflammtory expert Dr. Lachmann discusses these conditions.
More School Resources
These are links to more resources when working with your child’s school in getting a 504 plan.
School 504 Plans for Kids with Periodic Fever Syndromes – Detailed information on what is a 504, how to get a 504, and what to put into a 504.
Arthritis Foundation Sample 504 Plan Accommodations – A good list of what you might need in your child’s 504. More 504 information can be found here.
Autoinflammatory Alliance’s School Issues Pinterest Page – More links to help you with 504 plans and other school issues.