Rare Disease Day 2014 –

This is important to me too, living with neurosarcoidosis, a rare form of a rare disease itself. Thanks Rebecca for highlighting this.

Rebecca Bradley

rdd-logo 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…

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