Friday, 27 February 2015

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

    ReplyDelete
  2. Such a powerful video and so important to help raise awareness of the many rare diseases that people are living with.

    ReplyDelete

Thank you for stopping by, I truly appreciate all comments x

A little Note About Positive Reviews on Raisie Bay



Some people only write reviews when things go wrong with products, which is good because it lets people know that there could be potential problems. I've also seen negative feedback with say things like, I had to return this item because the colour did not suit me...is this useful?

I write reviews on most items I buy because I like to give genuine feedback. If I have a genuine problem with a product I will write my review in the appropriate place.

I write reviews on my blog too, but they are mostly positive. Why? Because I only write reviews for the things I've loved. If I don't love them I let the person who sent me them know with details why and then let them decided if they would rather me write a negative review or not write one at all. It's always the latter.

This is my blog, my place and I'll let you know about the things I love. If you want to find out what other people have hated about the product then you will need to look elsewhere.

My reviews may all be positive, but they are still genuine.
Related Posts Plugin for WordPress, Blogger...

Please Support My Sponsors


affiliatewindow.com -->