Tag Archives: PFAPA

Autoinflammatory

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 →

Autoinflammatory

A brief history of autoinflammatory diseases

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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 →

Autoinflammatory

Your headaches…are they autoinflammatory?

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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? →

Autoinflammatory, Journal Article

Measuring disease activity

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Autoinflammatory diseases are diverse: they are caused by different genes, present at various stages in life, and cause a variety of symptoms.  Even in patients with the same disease, such as familial Mediterranean fever (FMF), attacks may differ widely; some can have severe abdominal pain while others develop headaches.  As a result, measuring disease activity–how active the disease is and how severely the patient is affected–has been quite difficult.

Continue reading Measuring disease activity →