Tag Archives: FMF

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

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

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

The microbiome in autoinflammatory diseases: a missing link?

We are not alone.  Right now, there are over 500 species of bacteria living in your mouth.  Each part of your gut (stomach, small intestine, large intestine) provides a home to 1000 unique bacterial species.  There are many more bacteria living on your skin and in every orifice in your body.  Microbes make up (at least half of) who we are.  We are a walking ecosystem with an incredible diversity of organisms unique to us, and in more ways than one, they make up who we are and what we do. Continue reading The microbiome in autoinflammatory diseases: a missing link?

Measuring disease activity

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