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 diagnosis and treatment of the disease.
Vasculitis means inflammation of the blood vessels, arteries, veins or capillaries. When such inflammation occurs, it causes changes in the walls of blood vessels, such as weakening and narrowing that can progress to the point of blood vessel blockage. A result of vasculitis is that the tissues and organs supplied by affected blood vessels do not get enough blood. This can cause organ and tissue damage that can even lead to death. Vasculitis is a family of rare diseases that can affect people of all ages. Though some forms of vasculitis improve on their own, most require treatment. The length of treatment varies, with some people using medications for extended periods of time. Click here to learn more about the individual vasculitic diseases.
Newly Diagnosed
Vasculitis represents a family of rare diseases and can affect people of all ages. The outlook for people who have vasculitis varies depending on both the type and severity of the vasculitis. Treatment is often very effective if vasculitis is diagnosed and treated early. In some cases, it may be a chronic problem, requiring ongoing treatment, or it may come back (“flare”) after a period of remission. In more severe cases, treatment may not help, and vasculitis can lead to disability or even death.
Although the diseases share many of the same symptoms and treatment courses, each is different and patients must learn as much as possible about their individual disease. Additional research is needed to learn more about the various types of vasculitis and their causes, treatments and remission patterns.
Education Concerns: How will my child’s vasculitis affect his/her education?
Parents of children with vasculitis are often very worried about how vasculitis will affect their child’s learning. The information in this section focuses on the U.S. educational system but we welcome additional information/suggestions from other parts of the world as we recognize the importance of education for all of our younger patients. Please email your suggestions/recommendations to the Vasculitis Foundation office.
Topics include setting up communication channels with the school faculty and staff, educational plans, being proactive and college concerns.
Transition Concerns
While some forms of vasculitis resolve quickly, other forms become chronic illnesses and require ongoing management. As teens transition to adulthood, there are many things to consider. Below is a list of resources to help patients and families make the transition as smoothly as possible.
VF YouTube Awareness Channel
The Vasculitis Foundation presents a series of videos featuring young adults who were diagnosed with a rare autoimmune disease called vasculitis. In these videos you will learn how young children, teenagers, and persons in their twenties had their lives turned upside down by various vasculitic diseases. Each story is extraordinary because it showcases how both the young patient and their families have adapted to the challenges in front of them.
~ Produced by Ed and Mary Becker for the Vasculitis Foundation.
VF YouTube Education Channel
The Education Channel features presentations, interviews and webinars by vasculitis experts defining vasculitis and explaining diagnostic procedures, treatment options and the latest in research efforts.
