Pediatric Vasculitis
Growing with Vasculitis
Welcome to the Vasculitis Foundation’s resource for our pediatric and young adult patients, their parents, guardians, families and friends. We hope you will find this information beneficial. Most families have never heard of vasculitis before their child is diagnosed with the disease. We believe it is critically important for you to learn as much as possible about vasculitis and the resources that are available to help you manage the disease.
Understanding Vasculitis: A Guide for Families
As a parent whose child has been diagnosed with vasculitis there can be an overwhelming number of things to do, information to learn, and appointments to keep to manage your child’s health. The Vasculitis Foundation’s guide for families provides you with the essential tools, information and resources you need when your child has been diagnosed with vasculitis.
Meet Children Who Are Living with Vasculitis
VF Patient Spotlight: Adisyn Wilson
A Mother's Perspective
You're Not Alone: Spencer's Advice
You're Not Alone: A Parent's Message of Hope
Learn About Pediatric Vasculitis
Pediatric Vasculitis Overview
Pediatric Medications: What's available for childhood vasculitis
Pediatric Vasculitis: Mental Health, Education, and Next Steps
Pediatric Vasculitis Research 2022
Vasculitis Pediatric Research Registry
You're Not Alone: A Parent's Message of Hope
In this great podcast epsiode, Spencer Ableman shares his journey with vasculitis, from a terrifying and unexpected health crisis to accepting this tough diagnosis and learning to embrace life with new challenges. Spencer, who has an incredibly optimistic outlook, has a story that is both informative and uplifting.
Spencer shares his experiences on everything from competing in a cross-country race with a port in his chest to explaining his condition to other teenagers. It hasn’t been an easy path, but he has found some silver linings – from having insider knowledge in his AP Bio class to seeing his friends waiting at the finish line of his first cross-country race.
“Even though it may seem like you’re in the dark there’s a light at the end of the tunnel and you just got to keep your head up if you want to see it,” says Spencer.
VASCULITIS TYPES
While the various types of vasculitis share common characteristics, each is unique and impacts the body in different eway. Learn about the types of vasculitis and how they manifest in pediatric patients.
LUNG INVOLVEMENT
Depending on which types of blood vessels are affected by the vasculitis, different changes can be seen in the lungs. Learn how vasculitis may impact the lungs and the treatments for vasculitis with lung involvement.
KIDNEY INVOLVEMENT
Depending on the type of vasculitis and its severity, different changes can be seen in the kidneys. Learn how vasculitis may impact the kidneys and the treatments for vasculitis with kidney involvement.
Treating Pediatric Vasculitis
The goal of vasculitis treatment is to have your child’s vasculitis enter “remission”, which means that the signs and symptoms of the disease, both systemic and local, are totally controlled, and actually disappear.
FAMILY RESOURCES
Your child’s diagnosis impacted your entire family. These resources will help guide you as you talk to siblings, maintain family relationships, and deal with financial and emotional stressors.
MANAGING SYMPTOMS & SIDE EFFECTS
The resources on this page are designed to help you take control of what you can control. There are concrete things you can do to nurture your physical and mental health and well-being.
Vaccine Guidelines
Your child who has vasculitis may be on one or more medications that can make it difficult for the body to fight off infections. One way that you can protect your child is by staying up to date on the recommended vaccines for their age group.
EDUCATION CONCERNS
It is an unfortunate reality that with a vasculitis disease there may come a time when attending school full-time or at all may simply not be possible. It is recommended that all children/teens with a chronic disease have accommodations in place at their school to allow them to have a full academic experience despite their illness.
INTERNATIONAL RESOURCES
Find educational information on pediatric rheumatological diseases such as vasculitis in over 50 languages, as well as contact details for pediatric rheumatology centers and family support associations around the world.
