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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

Your headaches…are they autoinflammatory?

She had headaches for many years.  She visited multiple doctors, including her primary care physician, a neurologist, a pain clinic, and even a headache specialist, but she was unable to find an effective treatment.   Over time she developed additional symptoms, including unexplained rashes and abdominal pain. When a close family member was diagnosed with an autoinflammatory disease, she was referred to my clinic to see if she, too, had one of these rare illnesses. Continue reading Your headaches…are they autoinflammatory?

Discovering colchicine for familial Mediterranean fever

Dining with colleagues in the cafeteria of the Massachusetts General Hospital, Dr. Stephen Goldfinger expressed his frustration about the strange illness of a patient he had recently seen. She had attacks of fever and abdominal pain that seemed to come out of nowhere.  Her attacks were brief, lasting 1-3 days, but were so severe that she became bed-ridden during these episodes.  Although the woman was otherwise healthy, a severe depression ensued from the unpredictable, debilitating illness that plagued her life every few weeks.

Continue reading Discovering colchicine for familial Mediterranean fever