Musings of a Medical Zebra

Archive for February, 2009

Medical Zebra and EDS Defined

If you’ve read my previous posts, you may have a couple questions:

What is a medical zebra?

What is Ehlers-Danlos syndrome?

I think I’ll start by answering the first question. Here goes…

In medical school, students are taught to diagnose patients based on the condition that’s most likely.  This makes sense.  Why attempt to diagnose something rare when the answer is right under your nose? This idea goes along with the saying: When you hear hoof beats, think horses, not zebras. The horses are the likely explanation, and the zebras are less likely. A medical zebra, then, is a person with a rare medical condition. As you may have guessed, Ehlers-Danlos syndrome is considered rare.

The second question has a longer answer.  Well, it does if you’re like me.  By that I mean you enjoy reading as much you can about topics that interest you.  While I  could go to the trouble of  comparing the types of EDS and explaining their various manifestations, it’s a waste of time. There are several sites that have prepared this information already.  My plan is to just give a brief explanation of EDS and provide links for you to investigate at your leisure.

So what is Ehlers-Danlos syndrome? Ehlers-Danlos syndrome (EDS) is a group of genetic connective tissue disorders that cause collagen to be weak. Collagen can be thought of as the glue that holds our bodies together.  It’s found in organs, blood vessels, bone, ligaments, etc. Collagen in EDS is sort of like old glue — overly stretchy and weak.  Knowing this will make it a little easier to understand some of the manifestations of EDS in the links provided.

For instance, if your organs are stretchy and weak, one of complications that can occur is a ruptured organ. Hollow organs, such as the intestines and blood vessels such as the aorta, are more prone to rupture.

Here’s another example: hypermobility. This simply means  flexibility. Individuals with EDS are hypermobile because their ligaments are overly stretchy. (Ligaments are responsible for holding joints in place.) The degree of hypermobility varies from person to person. In my case, I was born with the flexibility of a contortionist. Over the years,  I’ve lost a fair amount of this flexibility due to another manifestation of the condition:  spontaneous joint dislocations.

Why do dislocations occur in EDS? Again, ligaments in EDS are overly stretchy. Overly stretchy ligaments can’t hold joints in place. This can lead to dislocations, and eventually osteoarthritis.

Rather than proceed with more examples — I could go on and on — I’m going to stop here.  As promised, more in depth information can be found below. Enjoy!

Generic info

EDS info by type

March 17th, 2005

March 17th, 2005 is a day I remember quite vividly.  Yes, it was St. Patrick’s Day, but that isn’t why I am able to recall it so well. March 17th, 2005 holds significance to me because it was the day I was officially diagnosed with Ehlers-Danlos syndrome (EDS). With the diagnosis came many changes in my life. Well, that’s an understatement.  The life I planned for and the life I am actually living are very different.

If you were to ask me ten years ago what I’d be doing now, I would have told you practicing medicine.  Whether or not I made others aware of it, I wanted to attend medical school from the time I was in 3rd grade.  With my interest in health and science,  it just seemed like the career I was destined for.  As it turns out, I wasn’t actually supposed to be a doctor.  Instead, I’m supposed to spend a lot of time with doctors — as a patient.

This didn’t occur to me until recently.  I was doing career counseling with a psychologist.  My goal was to find something  I’d both like to do and can physically do — not an easy feat. One of the first questions the psychologist asked me was where I expected to be career-wise. I told her in medical school, or finishing up medical school.  It was at that point — when I said it out loud — that I realized I was never meant to be a doctor.  It’s still sinking in even now. I think that’s understandable. Afterall,  I didn’t miss out on the opportunity because of things I had control over – taking the right classes and getting good grades.  Nope. I missed out on the opportunity because of something I have no control over — something many people take for granted. I missed out on the opportunity because of my health.

I’m finally here!

Over the past few years, I’ve had some interesting life experiences. Many, but not all, are related to my health. I’ve been told on multiple occasions that I should relate these experiences though a blog, so here I am.  Well, I’m actually here thanks to my husband Danny.  Without him, many things wouldn’t be possible. This site happens to be one of them. Thanks Danny! 🙂

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