School 504 Plans for Kids with Periodic Fever Syndromes

…he current teacher, past teachers, the principal, school counselor, school nurse etc. Come to the meeting prepared with information on your child’s condition and a letter, or letters from their treating doctors. The medical letters should: Clearly state the diagnosis Clearly state that symptoms of the autoinflammatory disease, including fever or rashes, are not contagious How the illness impacts the child’s life activities (Examples: may be too si…

Continue reading

Be a Rare Disease Day & Autoinflammatory Disease Advocate!

…Disease Day. RareDiseaseDay.org has social media graphics that are free to download and use here. Download the image, and take your picture to share online with the “Handprints Across America” NORD program for Rare Disease Day. The Global Genes Project also has a number of helpful materials to use for Rare Disease Day. Share this video by Novartis that gives a simple, yet informative explanation of periodic fever syndromes. The video covers TRAPS,…

Continue reading

Distraction Techniques to Reduce Pain and Anxiety for Your Child When Giving an Injection

…of an anakinra injection. Click here for reviews of the ShotBlocker and Buzzy Bee Pain Relief System. Click here for more tips and resources for patients on biologic medications. References Pediatrics: Pain Reduction During Pediatric Immunizations: Evidence-Based Review and Recommendations Distraction therapy at the Great Ormond Street Hospital also download their helpful pdf of techniques from this same page on their website. Healthier Ever Afte…

Continue reading