Category Archives: Autoinflammatory

Managing Your Autoinflammatory Disease: Lifestyle and Wellness Workshop

Autoinflammatory diseases are rare groups of illnesses characterized by recurrent fevers and signs of inflammation.

While every autoinflammatory disease is different, they share many features about how they affect the health and well-being of patients and their families, and how stress and other triggers may cause disease flares.

This workshop explores how lifestyle and wellness practices can help in managing autoinflammatory diseases. We hope to empower patients and their families and provide them with tools to help them better manage their condition.

The workshop was sponsored by the Autoinflammatory Diseases Clinic at Boston Children’s Hospital and by a generous donation from a patient’s family.   It took place at Boston Children’s Hospital, Waltham, on April 28, 2018.

Below you will find selected videos from the workshop.  By clicking on the title, you’ll also be able to read the transcript of the video.

Opening Remarks

Introduction to the Workshop: Dr. Fatma Dedeoglu

 A brief history of autoinflammatory diseases: Dr. Jonathan S. Hausmann

Expert Presentations

Mindfulness Meditation in autoinflammatory diseases: Dr. Ezra Cohen

Cognitive Behavioral Therapy in autoinflammatory diseases: Dr. Carolyn Snell

Kara: A family’s journey with autoinflammatory diseases

Expert Panel Discussion

Experts answer audience questions about autoinflammatory diseases

Experts respond to questions about autoinflammatory diseases

An expert panel with physicians, psychiatrist, and a parent of a child with an autoinflammatory disease respond to audience questions during the “Managing your Autoinflammatory Disease: Lifestyle and Wellness Workshop,” which took place on April 28, 2018, at Boston Children’s Hospital in Waltham, MA. 

Watch the video or read the transcript below. Take a look at other videos from this workshop. 

The transcript has been edited for clarity.

Audience 1: What do you see in the future? Our son right now is suffering from CAPS and is on Ilaris…it works, but is there research on types of other medications or are we stuck with this for now? Continue reading Experts respond to questions about autoinflammatory diseases

Fevers, headaches, and a bear named Valentine: Our family’s journey with an autoinflammatory disease

Kara, the mother of a child with an autoinflammatory disease, describes her family’s experiences with diagnosing, managing, and living with an autoinflammatory disease. 

This talk was presented as part of the “Managing your Autoinflammatory Disease: Lifestyle and Wellness Workshop,” which took place on April 28, 2018, at Boston Children’s Hospital in Waltham, MA. 

Watch the video or read the transcript below. Take a look at other videos from this workshop. 

Transcript has been edited for clarity.

Julia was a beautiful baby with a full head of curly black hair. Her first couple of years were filled with sweetness and love, but also many unexplained fevers we chalked up to exposure to her two older brothers, who had persistent asthma, migraines, and, of course, normal frequent childhood illnesses.  Continue reading Fevers, headaches, and a bear named Valentine: Our family’s journey with an autoinflammatory disease

Cognitive behavioral therapy for autoinflammatory diseases

Dr. Carolyn Snell, a psychologist from Boston Children’s Hospital, discusses the benefits of cognitive behavioral therapy for autoinflammatory diseases. 

This talk was presented as part of the “Managing your Autoinflammatory Disease: Lifestyle and Wellness Workshop,” which took place on April 28, 2018, at Boston Children’s Hospital in Waltham, MA. 

Watch the video or read the transcript below. Also, take a look at other videos from this workshop. 

The transcript has been edited for clarity.

Dr. Carolyn Snell:

Hi, I’m Carolyn Snell. I’m one of the psychologists in the Medical Coping Clinic at Boston Children’s Hospital. We are a group of four psychologists and a number of trainees who work within Psychiatry with patients who have different types of medical conditions. We get a lot of referrals from Rheumatology, certainly, but from also departments across the hospital. We see people with a wide range of conditions, and helping people manage and cope with their medical conditions is one of the major things we do.

Continue reading Cognitive behavioral therapy for autoinflammatory diseases

Mindfulness Meditation in Autoinflammatory Diseases

Dr. Ezra Cohen, from Boston Medical Center and Boston Children’s Hospital, provides an introduction to mindfulness meditation in autoinflammatory diseases and discusses how it can be used by patients and their families.

This talk was presented as part of the “Managing your Autoinflammatory Disease: Lifestyle and Wellness Workshop,” which took place on April 28, 2018, at Boston Children’s Hospital in Waltham, MA. 

Watch the video or read the transcript below. Also, take a look at other videos from this workshop. 

The transcript has been edited for clarity.

Dr. Ezra Cohen: Welcome all. I trained in rheumatology and did a lot of research in complementary therapies and have done a lot of exploration in mindfulness over the years and have personally benefited a lot, so I thought I would spend a few minutes and introduce it to you. I’m sure people have heard of mindful meditation—It’s permeated our culture pretty deeply—but I’d like to just describe at least what I perceive it to be and in what ways it could be beneficial for kids and for families. Continue reading Mindfulness Meditation in Autoinflammatory Diseases