Category Archives: Advocacy

Do I Ever Run Out Of Ideas?

MyWriting Routine*

Everyone has their routine, right? So, I don’t do this each and every time I sit down to write, but it’s a pretty fair description of how most days go. I have to clean my desk off and I have to get coffee, but other things are subject to change.

Frank Garufi Jr of The Crohn’s Colitis Effect asked me a question that I actually get asked all the time, so I felt it was worthwhile to answer in writing.

“Don’t you run out of ideas to write about?’

And actually, no, I don’t. Now, that’s not to say there aren’t topics that I drag my feet on writing, or that I don’t have the resources to write at a particular time. But I never actually run out of ideas.

There are times I’m tired of writing. There are times that a particular topic is so personal that I can’t seem to get it out of my brain and into my computer. There are times when I just can’t find enough sources to write about a topic intelligently. But there are never times that I don’t actually have any ideas.

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Should IBD Patients Look To Mouse Studies For Hope?

Mouse In A Cage

Aww, the poor mice. Mice studies are important because they are a first step. But they’re just that — preliminary results that may or may not lead to something meaningful for patients.

I often make a joke that when I see a study done on mice or rats my eyes glaze over and I move on. I don’t, really, of course. I read them and will watch future research to see how things pan out, and if more study moves the knowledge further and leads to anything significant.

However, I don’t usually write up a summary or include it in an article as a reference. This is because I’ve learned that most people aren’t interested in reading about mice studies.

The other reason that I don’t often report on them is because they often don’t lead to anything. The mainstream media, however, often gloms on to these stories as if they’re going to change everything for patients. But they don’t, at least, they won’t for a long time. Continue reading

What’s It Like To Go To A Medical Conference?

Digestive Disease Week 2014

Members of the IBD Social Circle, Janssen Biotech, Tonic Life Communications, and gastroenterologists meeting at Digestive Disease Week 2014. I’m in the first row, fourth from the right. Everyone in this photo is an amazing IBD advocate, and I am privileged to have met them and worked with them.

Patients don’t typically get invited to medical conferences. However we are entering a new age of the “patient expert” — highly motivated patients who not only learn more about their disease for themselves, but share their knowledge with others.

In 2014, I was privileged to be invited to attend Digestive Disease Week in Chicago, and Advances in IBD in Orlando, courtesy of Janssen Biotech.

Attending a medical conference, for me, was both thrilling and terrifying, in equal measures. Continue reading

The Dangers of “Too Much” Advocacy

Rope Bridge

The way forward looks treacherous. But we must work together to find our way across.
Image © Sean Kearney

I had a recent revelation as I was planning an event for a group I volunteer with for one of my children. I am a volunteer, as so many parents are, and I spend a fair amount of time working with other parents and within the community to plan fun and educational events for our kids. But I am beginning to wonder if this is the best use of my time and if it’s providing the best experience for my children. And then it hit me – my thoughts were directly related to advocacy for chronic illness. Continue reading