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”

This is how I write science papers

Growing up in Venezuela, I really wanted to be a writer. I loved writing short stories with fictional characters named Petunia who overcame challenges and provided a moral in the end. I remember writing one story in which one of the characters tragically dies. My mom (a psychotherapist) thought it reflected a hidden trauma and sent me to one of her colleagues for evaluation. Fortunately, the therapist concluded (correctly, if I may add) that I was just being creative.

At the time, it never crossed my mind to become a doctor. This sentiment persisted through adolescence; when discussing my future in my college application essay, I stated: “I do not want to become a doctor or a lawyer.” And yet they still accepted me! Continue reading This is how I write science papers

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

The Dishwasher Dilemma

With our old dishwasher, we never knew whether the dishes in the washer had been cleaned. Before putting the dishes in the washer, we had to scrub them well, otherwise, they’d come out almost as dirty as they had been when we put them in. At the same time, the dishwasher would do such a poor job washing the dishes that, even after a cycle, they were never really clean (just ask a few of our guests who often left their glasses of water—or wine!—untouched). So, with the dishwasher full, we never knew whether we should turn it on to clean the dishes or place the dishes in our cupboard. Continue reading The Dishwasher Dilemma

This is what it’s like to be a physician

Let me tell you about a recent morning working in my outpatient rheumatology clinic. I’ll tell you less about the medicine, but more about my process of practicing medicine. I hope to shed light on what it’s like to be a physician, behind-the-scenes. As you’ll see, practicing medicine is time-consuming; it takes much more than the time spent with the patient in the clinic or at the bedside. Or at least it does if you really want to take care of your patient. Continue reading This is what it’s like to be a physician

Uncovering the mysteries of autoinflammatory diseases and other rheumatic illnesses.

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