A topic that should be on all scientists’ minds. What do we do about rare diseases?
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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