Friday, May 1, 2009

When you hear hoofbeats....think ZEBRAS!!! Did I Mention I am a Zebra..

Most medical students are taught the aphorism coined by Dr. Theodore Woodward " When you hear hoofbeats, think horses, not zebras".

Leonards Law of Physical Findings: Its obvious or its not there.

KISS Principle- Keep It Simple Stupid!

In Medical terms a Zebra is not the lovely cute little striped animal that roams the Savannah, it is the term for a rare and unusual diagnosis, an unlikely diagnostic possibility, an obscure and unlikely diagnosis from ordinary symptoms. In our world of EDS (Ehlers-Danlos) somewhere in our journey someone has heard those hoofbeats and have thought....wait a minute...a Zebra! For many many of us that has taken years, anguish, pain, denial, and strife. In the end being a Zebra is not bad at all, its rather honorable, I wear my stripes with pride. Each one represents the way I am different yet the same, I am still a horse shape just like you, my pattern is just different. Just like each Zebras stripe pattern is different each person effected with EDS has different stripes as well, we all manifest our symptoms differently, we all wear our stripes on the outside but each and every one of those stripes is unique just like our symptoms.

May is EDS awareness month. Now I do not want to forget that May is also national awareness month for many other diseases including Asthma, Arthritis, Neurofibromatosis, Hepatitis, High blood Pressure, Osteoporosis, Skin Cancer, and many many more. But EDS is very close to my heart as my son and I are both Zebras. We have Ehlers-Danlos Type III and I exhibit crossover features of Type IV. Below you will find some general information regarding Ehlers-Danlos and I will post additional information throughout the month of May. If you have any questions please feel free to ask!

Collagen is the most abundant protein in the human body. It provides structural strength in human tissues, including heart and blood vessels, eyes and skin, cartilage and bone. When muscles ligaments tendons and even large organs are built with structurally defective collagen, there can be systemic weakness and instability evident throughout. Connective tissue disorders such as Ehlers-Danlos syndrome cause multiple manifestations that affect the functions of the human body. Although the same genetic fault is inherited in a family, each person's body develops unique ways of handling EDS, often causing fragility throughout the body.

There are 6 main types of EDS:

Classical, Hypermobile, Vascular, Kyphoscoliotic, Arthrochalasia, Dermatosparaxis, as well as other reported types that await definition.

Here are some guidelines when evaluating a diagnosis for EDS. This is not a Full Diagnostic criteria list, I will review the types more in detail in future posts this month, and ***Again I am not a medical professional. I receive most of my information form the Ehlers-Danlos national foundation EDNF.org as well through personal experience. **

*Almost every person with EDS displays some degree of large and small joint hypermobility with:
-Pain, chronic and widespread.
-instability
-spontaneous subluxations / dislocations

* When testing skin hyperextensibility:
-find several sites not subjected to mechanical force or scarring.
-pull the skin outward until there is resistance
-not every site must show hyperextensibility.

*a Rehumatologist will probably take a family history and test hypermobility using the Beighton score, which adds a point for extreme range of motion in each of nine joints.
-high Beighton scores should not be the sole criterion for EDS diagnosis;
-children are hypermobile;
-aging adults score as less hypermobile;
-there are hypermobile joints not tested by Beighton that should be considered.

*Genetic testing at present can be useful for determining some EDS types, but cannot rule out the presence of EDS.

Well That's it for today...Stay tuned for My/Our Story, More information on the Types of EDS, Information on Pediatric Screening, Managing Hypermobile EDS (my way), and some more useful information.


I'm Praying for Noah, April Rose, Kayleigh, for guidance, for stability (not just in my joints!)

I'm Thankful for my son, my "job", my family.

I'm Hopeful for, Cory, for Josh, for Kindergarten

Gumby / Mommy Zebra

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