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Showing posts from May, 2013

The Art of Misdiagnosis

We follow quite a few patient advocacy groups on Twitter, one of which is Hibbs Lupus Trust.  This morning I saw several retweets of their patient-followers discussing how long it took for them to get an accurate diagnosis of lupus.  For some, it was relatively quick - a few months.  I say relatively because for some it was over a decade.  How can this be, in our super-duper modern medical system?  The most advanced technologies to date are at our physician's fingertips, yet it took 15 years to get diagnosed?

Diagnosing a chronic illness can be tricky, especially if the illness is insidious or rare. According to the American College of Rheumatology, there are around 330 possible clinical presentations of systemic lupus erythematosus. Depending on what part of the country you live, your access to high tech medicine may be limited.  Or, depending on how rare your condition is, there may not be any specialists in a 500 mile radius who've heard of, let alone know how to treat, th…

CCFA Symposium

This is a belated post from when Tiff and I were able to attend the Crohn's and Colitis Foundation of America's 17th Annual Educational Symposium. This year it was held in Skokie, Illinois, just minutes away from our new office location in Evanston.

Tiffany and I didn't present this time around, but had a booth in the Exhibit Hall. It was truly a wonderful day of meeting with patients and professionals that were all there for a common cause...Inflammatory Bowel Disease. As you all know, IBD is one of our passions at Oak Park Behavioral Medicine, and cause close to our heart. With nearly 1 in 200 Americans with this illness, there seem to be more and more referrals we get that are newly diagnosed kids and adults with IBD. The first place I encourage patients to visit is the CCFA website.

They have a list of research studies and clinical trials currently going on, an interactive disease tracker to help manage symptoms, a special section for college students, and of course in…

A Day in the Life

Woke up, fell out of bed
Dragged a comb across my head
Made my way downstairs and
Drank a cup...
(The Beatles)

Except yesterday was a rather large cup of hypoallergenic formula, which I committed to drink for 1 day in lieu of food as part of the annual Eat Like Us challenge for EGID awareness.

I'm ready.  Let's do this.  I asked some reliable sources and found out that for my gender and weight, I'd need to drink about 64 oz of formula to get adequate calories for the day.

When I saw clients at Northwestern, I met with a woman who had to go on an all-formula diet for several weeks.  We talked about how hard this was and I remember her saying "I was able to get about 20 ounces down today."  I never really understood what that meant until yesterday.  For my experience, I opted for Alimentum baby formula, which isn't exactly what people with EGIDs typically use, but is similar.

Here are the highlights from my day in the life:

[7:30 a.m.] I left my house for a lon…

National Eosinophil Awareness Week

May 19 through the 25th is National Eosinophil Awareness Week.

Last week I blogged about the "Eat Like Us" challenge that I hope you have decided to take part in this Friday.  I will be drinking only Alimentum formula for the day and eating a lot of dum dum suckers to disguise the taste.  I realize there is some milk derived product in Alimentum, but my access to Neocate and other truly hypoallergenic formulas isn't what it once was; and since I've done the 8 food elimination diet in my life, I wanted to kick it up a notch and see what life on these not-so-tasty formulas is like.  No offense to Abbott Labs, but this stuff leaves something to be desired.

I hope you'll join me on Friday for the challenge, whether it's eliminating the top 6 foods from your diet to sustaining for a day on formula.  Let's put on the shoes of those who live with EGIDs and experience first hand what life is like, if only for 24 hours.
EGID factoid of the day:
The first study to …

Eat Like Us

May 24th marks the 5th annual "Eat Like Us For a Day" Challenge, an event sponsored by GAEOS (Georgia Eosinophilic Disorder community) that aims to raise awareness of Eosinophilic Gastrointestinal Diseases (EGIDs).  Even if you've never heard of an EGID before, I highly recommend taking part in this one-day event.

So, what's an EGID?  
EGIDs are chronic conditions of the digestive system that are caused by too many of a certain white blood cell, the eosinophil, congregating in a certain area of the system. These white blood cells respond to some sort of environmental trigger, usually food, and attack it.  Please note that EGIDs are not the same thing as a food allergy, which is caused by a different reaction from the immune system.

The most common place for battle seems to be the esophagus, resulting in eosinophilic esophagitis, but the stomach, small, and large intestine can also be affected.  The symptoms reflect the part of the GI tract affected, and include abdom…

Why Blogging is Good for You

When I was in graduate school one of the first research projects I worked on was evaluating expressive writing as a form of treatment for people living with Irritable Bowel Syndrome.  In case you haven't heard of this term, expressive writing  in the research world involves the use of directed writing exercises as a means to reduce the negative effects of stressful life events.  Anyone living with a chronic illness would agree that it can be a stressful life event.

One of the pioneers of the research on expressive writing is James Pennebaker down at the University of Texas at Austin.  He has devised an entire system and software to analyze writing samples and understand how expressive writing can have positive health effects.  His findings include:

People who write about their worries and concerns have a decrease in physician office visits when comparing pre- and post-writing periods.Writing about troubling topics has been shown to improve immune system functioning, including anti…

Chronic Illness and Suicide

Chronic illness is complicated. When one is newly diagnosed, there is a challenge of learning how to explain your illness to others, and learn who to let in on your journey of ups and downs. Here are some of the common reactions we get when we see clients who are newly diagnosed with an illness, trying to navigate a world of stigma and shame. "Why would anyone want to hear about my illness? And what's the point of talking about it- either way I have to deal with it and I don't want pity. I hate burdening my loved ones. What if people change how they think of me? What if people ask embarrassing questions or have judgmental reactions?" 

Honestly, these are all valid concerns! We spend time talking with clients about each of their questions and also encourage them to tell people who are safe, and to only disclose what they are comfortable with. We also know that not everyone benefits from a support group, and that everyone reacts differently to their diagnosis. Some may …