Category Archives: Autoinflammatory

A brief history of autoinflammatory diseases

Dr. Jonathan Hausmann, Boston Children’s Hospital and Beth Israel Deaconess Medical Center, provides a brief history of 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.  You can also view the workshop introduction by Dr. Fatma Dedeoglu.  

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. Jonathan Hausmann:

Thank you for that talk. I just wanted to talk a little bit about how I became interested in autoinflammatory diseases. This was a few years ago, I was at a Passover Seder with my family and there was a distant uncle that I’ve never met before. He was a dermatologist and he was working on a book about these weird autoinflammatory diseases. That was my first year as a rheumatology fellow in pediatrics and he was looking for somebody to write a chapter about pediatric autoinflammatory diseases. Continue reading A brief history of autoinflammatory diseases

Introduction to “Autoinflammatory Disease Lifestyle and Wellness Workshop”

Dr. Fatma Dedeoglu, Boston Children’s Hospital, introduces 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. Fatma Dedeoglu: Good morning and welcome. I really appreciate all of you showing up here today on a gorgeous Saturday. I’m sure you could have done many other things but I really appreciate you coming.

I’m Fatma Dedeoglu, one of the rheumatologists at Boston Children’s Hospital. I work with Dr. Hausmann. I want to thank all the panelists who came here and volunteered to share their expertise. To our organizers, Nikki and Elyse and also our patient representatives Amaya and Danielle. This could not have been done without them. Continue reading Introduction to “Autoinflammatory Disease Lifestyle and Wellness Workshop”

Autoinflammatory Diseases Workshop

We are holding our first (annual?) Managing Your Autoinflammatory Disease: Lifestyle and Wellness Workshop on Saturday, April 28 in Waltham, MA. The workshop is open to children and adults, and it is free to attend!

The purpose of the workshop is to explore various methods to manage your autoinflammatory disease. While every autoinflammatory disease is different, they share many commonalities about how they affect the health and well-being of patients and their families.  As such, this workshop will address the psychosocial aspects of managing autoinflammatory diseases, especially in empowering patients and families to better manage their condition.

We will have discussions with Rheumatologists, psychologists, parents, patients, reiki masters, art therapists, physical therapists, and yoga practitioners about using various techniques that may improve wellness, even in the setting of autoinflammatory disease. We will also hold roundtable discussions with patients and their families to share tips, wisdom, and life advice.

Please click here to register.

 

Autoinflammatory Diseases Workshop Schedule

9:30am– Registration Opens

10am– Opening Remarks
Fatma Dedeoglu, MD
 Jonathan Hausmann, MD

10:15-11:00am– Expert Q&A Panel
Facilitated by Nikki Tennermann, LICSW

  • Dr. Ezra Cohen, Rheumatologist, Boston Medical Center/Boston Children’s Hospital
  • Carolyn Snell, PhD, Pediatric Psychologist, Boston Children’s Hospital
  • Kara, Parent of a child with an autoinflammatory disease

11:00am-12:00pm– Psychosocial Disease Management Presentations
Facilitated by Elyse McCue, MSW

  • Grace Harrington Murdoch, Reiki Master Teacher
  • Jen Kray, ATR, LMHC, Art Therapist
  • Sara Collins, L/ATC, CPT, Athletic Trainer/Injury Prevention Specialist
  • Caitlin Broughton, Yoga Practitioner

12:00-1:00pm– Lunch
Mingle with other families! Stop by the research table and meet research specialist Ed Anderson!

1:00-1:45pm– Roundtable Discussions
Small group facilitated discussions about topics related to lifestyle and wellness for youth with autoinflammatory conditions

1:45-2:00pm– Closing Remarks

Predicting Colchicine Response in Patients with Undefined Autoinflammatory Diseases

 

Background/Purpose:

Autoinflammatory diseases (AIDs) are a rare group of illnesses characterized by unprovoked episodes of fever and systemic inflammation.  An understanding of their pathophysiology has led to the development of effective treatment guidelines. Unfortunately, many patients with recurrent fevers have symptoms that do not match any of the known AIDs. There is an unmet need to provide effective treatment to these patients with undefined AIDs (uAIDs). Colchicine, a treatment for patients with familial Mediterranean fever, is sometimes used to treat patients with uAIDs. We examined the efficacy of colchicine in patients with uAIDs and identified clinical factors that predicted a good colchicine response.

Continue reading Predicting Colchicine Response in Patients with Undefined Autoinflammatory Diseases

Colchicine efficacy for undefined autoinflammatory diseases

Purpose

Autoinflammatory diseases (AIDs) are a rare group of illnesses characterized by unprovoked episodes of fever and systemic inflammation.  Patients with defined AIDs benefit from evidence-based treatment guidelines1. Unfortunately, many patients with AIDs do not have a genetic diagnosis and their symptoms do not match any of the known AIDs. There is an unmet need to provide effective treatment to these patients with undefined AIDs (uAIDs). We examined the efficacy of colchicine in patients with uAIDs and identified patient characteristics and clinical factors that predicted a good colchicine response.

Continue reading Colchicine efficacy for undefined autoinflammatory diseases