Tomorrow is Rare Disease Day. An annual awareness raising event for those living with rare diseases and the decision makers about the impact of these diseases on the patients lives.
It’s to raise awareness to everyone, because we all come into contact with people who may not even look as though they have an illness, but actually be living with a pretty disabling rare disease.
I am one of those people living with a rare disease. Ehlers Danlos Syndrome.
I have found first hand how difficult it is to navigate the NHS system with such a diagnosis. It’s either not understood and discarded or maybe even believed to be more than I’m displaying to them at that time, so I’m dismissed. This shows a real lack of understanding.
The mascot within the Ehlers Danlos Community is that of the Zebra, because trainee Doctors are taught, that if they hear hoof-beats, think horses, not zebra’s. They are taught to not think too rare.
Tomorrow, we are thinking of the rare. We are out there, Zebra’s and more. And this years theme is Care. Those who care for us. family and loved ones and those in the medical profession and decision makers who do have the knowledge and understanding and are fighting one step at a time.
If you can tomorrow, please share this post, or one of the images, or video’s and remember the rare diseases out there. You will find their website Here.
Thank you.
Kate says
Reblogged this on Some of my favourite posts and commented:
This is important to me too, living with neurosarcoidosis, a rare form of a rare disease itself. Thanks Rebecca for highlighting this.
Margot Kinberg says
Rebecca – There are many people who, like you, live with diseases that are rare and that therefore, don’t get the ‘press’ that better-known diseases do. That doesn’t make their need any less great though. I’m very glad you’ve brought this up. Sometimes hoofbeats do mean zebras.
Rebecca Bradley says
They do indeed Margot. Unfortunately it takes that little but longer to get diagnosed.
Alex J. Cavanaugh says
Just because it’s rare doesn’t mean it’s real, and not all doctors are trained like House.
Rebecca Bradley says
They’re Definitely not! I loved House 🙂
Glynis Smy says
I understand the frustrations of those with rare disorders. My mother has one, and even though I am a nurse, I am still given blank stares by my professional counterparts when I offer a snippet of an idea.
Jacqui Murray says
My daughter has a rare disease–eosinophylic granuloma. A mouthful and a nasty bugger. All’s good. My heart is open to rare disease conversations.
Jacqui Murray says
Reblogged this on The Sizzle in Science and commented:
A topic that should be on all scientists’ minds. What do we do about rare diseases?