HELPFUL RESOURCES

Links on juvenile arthritis, autoimmune diseases that might overlap with JA, videos, and resources...

AUTOIMMUNE ARTHRITIS - Juvenile (aka: Juvenile Arthritis, Juvenile Rhuematoid Arthritis, Juvenile Idiopathic Arthritis)

ACR's Practice Guidelines with Arhritis in Children
American College of Rhuematology (ACR):  Arthritis in Children
Arthritis Foundation's Disease Center:  Juvenile Arthritis
Boston's Children's Hospital:  Arthritis and Rhuematic Diseases
Center for Disease Control and Prevention:  Childhood Arthritis
CDC's Juvenile Arthrits Case Definitions and Prevelance
Genetics Home Reference: Juvenile Idiopathic Arthritis (JIA)
Healthy Children (powered by American Academy of Pediatrics):  JIA
Juvenile Arthritis
Juvenile Rhuematoid Arhritis
Kid's Health Nemours:  Juvenile Idiopathic Arthritis
Merck's Manual: JIA
Orphanet:  Portal for Rare Diseases and Orphan Drugs

AUTOIMMUNE ISSUES (sometimes in conjunction with types of JA)

Dermatomyositis
Eosinophilic Esophagitis
Gastritis
H-pylori infection
Hypogammaglubulinemia
Immune Dificiency Foundation (downloadable resources)
Increased prevalence of familial autoimmunity in simplex and multiplex families with JRA
Pso Me (Psoriatic Arthritis)
Rare Juvenile Primary Systemic Vasculitis
Vitamin Deficiency Anemia
Vitamin D Deficiency in Undifferentiated Connective Tissue Disease
US incidence of juvenile dermatomyositis, 1995–1998

EDUCATIONAL RESOURCES (school, 504, IEPs, Positive Behavior Support, Social-Emotional, etc.)

Arthritis Foundation's School Success
Arthritis Foundation's Additional Education Resources:  Early Childhood to Adult Transition
BACK TO SCHOOL: video helps kids with arthritis explain their needs to teachers
Center on the Social Emotional Foundations of Early Learning (CSEFEL)
CSEFEL's Family Social Emotional Resources for Young Children
CSEFEL's Practical Strategies for Young Children (reproducibles/printables)
Developmental Behavioral Pediatrics
The National Child Traumatic Stress Network
Office of Special Education Programs, IDEA
Technical Assistance Center on Social Emotional Interventions (TACSEI)
TACSEI's Individualized Interventions (Positive Behavior Support)
TACSEI's Social Emotional Family Resources
Wright's Law 504 and IDEA
Wright's Law IDEA 2004

MEDICATION INFORMATION

Actemra (Tocilizumab)
DMARDs for JIA:  A Review of the Research
Enbrel
Hizentra (subcutaneous-immunoglobulin-therapy)
Humera
Immunoglobulin Therapy
Methotrexate
Orencia
RAPPORT Clinical Trials (Rilanacept)
Remicade (Infliximab)
Rituxan (Rituximab)
Tocilizumab(Actemra): The evidence for its place in the treatment of JIA 

PROUD PARKER MOMENTS

Living with Systemic Juvenile Arthritis: Mom and Son Share Personal Journey
A Day with Zobrist Makes a Kid's Wish Come True
"At the Table" Make-A-Wish Story (Parker meets Ben Zobrist with the Rays)
Make-A-Wish Parker Lentini Meets Ben Zobrist (TBO photo gallery)

RESOURCES


American College of Rhuematology
Arthritis Foundation (click on the "juvenile arthritis" tab)
Arthritis Foundation's 2011 JA Conference Presentation Slides
Arthritis Foundation's 2012 JA Conference Presentation Slides
BCJ Health:  Information Sheets from Arthritis Australia
Childhood Arthritis and Rheumatology Research Alliance (CARRA)
Cure JM
Food Allergy and Anaphylaxis Network
High-5-Club
IAAM
Immune Deficiency Foundation
JGCAF Hold on to Your Dreams (wish foundation)
Lab Tests Online
Make-A-Wish Foundation
Miracle Flights for Kids (donate frequent flyer miles to children can get to medical specialists)
Mixed Connective Tissue Disease (MCTD) Hope
National Rheumatoid Arthritis Society:  What is JIA?
Rheumatology Image Bank
The Positive Pear
The National Psoriasis Foundation
7 Safe Sunscreens
Starlight Children's Foundation Florida
WEGO Health (empowering health activists to help others)

RESOURCES FOR CHILDREN

Body Check Journal
Camp Boggy Creek

Igi Therapueutic Play Kit (free play therapy bear with medical supplies and story)
Kids Get Arthritis Too


SYSTEMIC ON-SET JUVENILE ARTHRITIS AND OTHER FORMS OF JA:

AF Researcher Makes Major JA Discoveries (MAS)
Arthritis and Vasculitis
CARRA: Working with Children with JIA
Does systemic-onset juvenile arthritis belong under juvenile idiopathic arthritis?
Early predictors of poor functional outcome in systemic-onset
Juvenile Dermatomyositis
Juvenile Idiopathic Arthritis
Kids with Rare Arthritis at Risk of Lung Problems (systemic JIA)
Outcome following onset of juvenile idiopathic arthritis
Questions and Answers About Juvenile Arthritis
Recent improvement in anti-rheumatic drugs
Response of Systemic Onset JRA to Etanercept: Is the Glass Half Full or Half Empty?
Rheumatology Image BankLiving with Systemic JA
Role of Interleukin-1 (IL-1)
Still's Disease (JIA)
Still's Disease=Stills Life
Systemic Autoinflammatory Diseases (SAID) Support
What is Still's Disease?

TRANSITIONING TO ADULTHOOD

Centre for Adolescent Rhuemotolgy
Growing up with arthritis
Making the medical leap
Preparing for adulthood
Transitioning and compliance
Treatment plan adherence

VIDEOS

Autoimmune Systemic Diseases: Kids Get Arthritis Too! (Parker made this)
Awesome Arthritis Confessions (Dad and Parker at 2011 JA Conference)
Children with Arthritis-Today Tonight
Breaking down "Old Arthritis" - by the 16-18 year olds: 2011 JA Conf
Caitlyn Ryan's Story
Gavin's Story!  Living with JA
Juvenile Arthritis...Did You Know (Esella)
Kids Get Arthritis Too!
Myositis (ABC News Video)
Parker's Life 2014
Project 6:  Fruitcakes in the Alley (Parker Lentini Honoree Speaks)
William's Wish



5 comments:

  1. Thank you for the resource lists! My daughter is 10, diagnosed at 2.... Now up to psoriatic arthritis and chronic uveitis...... Www.thewarrens-baileysmama.blogspot.com. Facebook: Kim Jenkins Warren

    ReplyDelete
    Replies
    1. I hope the resources are of some help. Hugs to you and your daughter.

      Delete
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