A topic that should be on all scientists’ minds. What do we do about rare diseases?
Originally posted on Rebecca Bradley:
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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