Rare Disease Day 2015

If you look at my links above you will see one saying My Little Zebra. This takes you to my blog written especially for Star, a medical zebra.

“When you hear hoof beats, think horses not zebras”

This is what medical students are taught, to look for the obvious.

Star has been diagnosed with Hypermobility Syndrome Type III which is very similar to Ehlers Danlos Syndrome. I am chasing a diagnosis of EDS for her because I believe that is what she has. We were told by a surgeon after an operation that her connective tissues were too stretchy which is why they would not hold her discs in her spine together.  This combined with the Hypermobility, her pain and the subluxations (as well as many other symptoms) she has do signify that she has EDS.

Had she had the diagnosis earlier her treatment for her subluxation may have been different. Everything they tried for the first six months did not work, simply because of her connective tissues. This is the problem faced by many with rare conditions and that is why I’m writing this in aid of World Rare Disease Day.

This is the official video for Rare Disease Day, please take a minute to watch.

Today is the day to put rare diseases in the spotlight.

2 Comments

  1. March 2, 2015 / 11:50 pm

    this is ringing so true right now. thank you for sharing. x

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