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.  Stay tuned for more presentations from this autoinflammatory disease workshop over the next few days!

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.

Dr. Hausmann and I run the Autoinflammatory Diseases Clinic at Boston Children’s Hospital,  and we realized that a lot of times, day-to-day stress may be triggering flares and inflammation. Even what we call “good stress,” like excitement from birthday parties or travel, they seem to trigger episodes of inflammation and fever. Therefore, learning techniques to manage stress, in general, are helpful for disease management. There are some studies showing that stress-reduction techniques decreased the number and the severity of the flares.

Dr. Hausmann and I, we often discuss these issues with our patients when we see them in the clinic. Although we cannot avoid stress, we discuss how we can better manage day-to-day stress to prevent flares. We asked, “wouldn’t it be nice to bring a lot of our patients together and delve into these issues a bit more?”

In the clinic, sometimes we don’t have enough time to go over the different aspects of how to manage stress, and we’re not trained to do a lot of stress management. We recommended bringing patients and experts together so you guys could discuss and share your experiences. You can help one another.

With Amaya and Danielle’s help, we surveyed autoinflammatory diseases patient groups to try to get a sense of what questions need to be answered for patients with these diseases. What are the topics that people want to discuss? We formulated today’s workshop based on those topics.

All of you know that autoinflammatory diseases are rare. There is a lack of awareness, even among the medical community. There are going to be doctors in the community that will retire without seeing a single patient with an autoinflammatory disease. I’m sure you all experience that you are actually the educators of these doctors in the community because you know much more about the disease that you’re dealing with than they do.

Even though familial Mediterranean fever has been known since the beginning of the last century, we still don’t understand many aspects of it. There’s a lot of research going on, and there’s more to know about why it actually happens.

There’s a lot of work going on in learning more about these conditions, but I also want to emphasize that not knowing why they happen doesn’t mean they cannot be managed. We still can work on their management while we continue to understand these groups of illnesses better. Just working as a team–doctors, nurses, patients, parents, teachers, community organizations—can help to improve our understanding of these conditions.

Autoinflammatory diseases are a very big spectrum. There are many differences between the various conditions, but they also share some basic fundamentals. All of them involve the immune system and lead to inflammation. Inflammation and the immune are affected by many different things–genetics play a role and the environment plays a role. We know that stress affects the immune system. Think about of cold sore; it can pop out under times of stress.

I think the idea is adopting healthy lifestyles, eating healthy, doing exercises, and sleep hygiene. Our bodies are whole, so we need a wholesome approach to health. Because we don’t understand all the aspects of autoinflammatory diseases, we can work together to raise awareness and to do long-term data collection, so we know where things are going, as well as contributing to research.

With these goals in mind, we established the autoinflammatory clinic at Boston Children’s Hospital. Also, Dr. Hausmann is an adult rheumatologist as well who helps to run the autoinflammatory clinic at Beth Israel Deaconess Medical Center, so we provide a continuum of care for children, adults, and the entire family.

In achieving these goals, we know teamwork is important–there are so many examples of parent and patient organizations where their engagement helps to move things forward much, much faster and also the research is more relevant to the families because they help to set the direction of research.

I just wanted to do this workshop as a starting point, planting the seeds of this partnership together. Then we can go from here and try to move things along and do many more of these workshops in the future. Welcome again. Thank you.

 

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