Category Archives: Autoinflammatory

2020 Boston Children’s Hospital Autoinflammatory Disease Family WorkshoP

The Boston Children’s Hospital Autoinflammatory Disease Family Workshop will take place on Saturday, August 22, 2020, from 1-3pm EST and will be held virtually through Zoom.

The program will include discussions on disease updates, emotional wellness and coping, optimal nutrition, and how to work effectively with schools and school nurses. We hope to have an informative conversation and opportunities for Q&A. 

Please register for this free event here: https://forms.gle/B2mUQjgUbU6rwCJM9.
Zoom links will be sent to all pre-registered attendees.

Workshop Schedule

1PM-2PM: Medical Presentations and Scientific Talks

  • “What Are Autoinflammatory Conditions” – Jonathan Hausmann, MD
  • “Update on Research and Approaches to Discovery and Treatment” – Lauren Henderson, MD, MMSc
  • “Inflammation and the Gut/Anti-Inflammatory Diets” – Sophie Burge, MS, RDN, LD
  • “Treatments, Challenges, Medications and Side Effects” – Fatma Dedeoglu, MD

1:30-2:00PM Question and Answer Session

2:00-2:15PM: Break

2:15PM-2:45PM: School and Wellness Talks

  • “Partnering with Schools: Is the School Nurse at the Table?” – Shanyn Toulouse, MEd, BSN, RN, NCSN, Northeast Regional School Nurse Consultant
  • “Stress Management and Coping during COVID-19” – Judith Siegel, LICSW and Jodie Shea

2:45-3PM: Program Closing

Program evaluations will be emailed to attendees following the workshop.

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