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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Neurosurgeries

Rare Disease Day, 28th February 2017

#RareDiseaseDay #CareForRare

Health is a crown that the healthy wear, but only the sick can see it.


I, amongst 350 million other people worldwide, are battling every day with rare diseases that are mostly unknown, uninvestigated and incurable. The worst part about living with a rare disease is the unknown. Nothing in your life can be certain because at anytime your life can come crashing down.

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‘Patient Story’ Speech

“All my stories from the last eight months tell a story…my scars are a reminder when life and EDS tried to break me, but failed to. A story that says, ‘I survived’.”

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Change: The Battle of Acceptance

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“You let time pass – that’s the cure. Change can be difficult to accept. You survive the days. You put one foot in front of the other and get on with it. You float through the weeks and months wondering if your life will ever go back to what it used to be. And then, one day you find yourself alone on a bench in the sun and you close your eyes and lean back and you realise that you’re okay. You realise how far you have come. You realise you’ve just fallen onto a different path leading you to your true destination. You realise, ‘I can do this’. Behind every smile there is an untold story. Sometimes it’s a mask to hide pain and suffering. Sometimes it’s a true reflection of happiness.”  • Laura Lee •

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