mind, body & EDS

| living with a rare, invisible, genetic disease |


May 2017

Vlog: VP Brain Shunt Update & Recovery

Hello All! I have put together a vlog compilation of 5th brain surgery, post-op checkup and general update on how I am now feeling since being fitted with a VP shunt. Have a watch to see how I am progressing with my recovery and the watch how a VP shunt is readjusted to a different setting…

Homeward Bound

Homeward bound ✌🏼🇬🇧  Often when you think you are at the end of something, you are actually at the beginning of something else.

Each one of us EDS neurosurgery and brain surgery survivors find ourselves having to start over with almost every aspect of our life. But I like to look at this as every ending is a new beginning. A new beginning that holds great possibilities and most importantly, hope.

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Vision Therapy Results!

So yesterday was a pretty emotional day. It was a day that I will cherish forever and is evidence of what can be accomplished if you set your mind on any goal in life – a combination of determination, persistence and most importantly, hope.
My vision therapy examination results (communication of how the eyes translate information to the brain) were beyond believable and even the specialist was dumbfounded and couldn’t believe the amount of progress I’ve made in just a few months…for the first time ever, my results came back as “normal”!

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‘Dazzle Together’ for May – Ehlers Danlos Syndromes Awareness Month

May is Ehlers Danlos syndromes awareness month🎗Ehlers Danlos syndromes are unexpected in the medical world because they are rare, mid-diagnosed and under-diagnosed. 

“When you hear hoofbeats, it really is a zebra.” 

The zebra is a symbol of EDS. No two zebras have identical stripes just like no two people with EDS are identical. A group of zebras in the wild are called a dazzle – that’s why every May we all assemble to be stronger and dazzle together to raise awareness ✨ 

Please consider donating to The Ehlers Danlos Society that will go towards funding research to find a cure 🔬 

What are you doing to show your stripes and support? 

Love wearing my beautiful handmade EDS awareness bracelet made by and given to me by one of my dear zebra friends, Christina. Go get one to show your support by visiting her Etsy shop here

#DazzleTogether #DazzleYourCommunity #EhlersDanlosSyndromes #EhlersDanlosAwareness #TheEhlersDanlosSociety #EDS #edsawarenessmonth #ZebraStrong

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