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Awareness

‘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

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.

Continue reading “Rare Disease Day, 28th February 2017”

Appeal Published in ‘Upstream’ Global Oil & Gas Newspaper!

‘Upstream’ is an international global oil and gas newspaper and in this weeks edition published today, Friday 13th May 2016, my appeal of needing to medically crowdfund £300,000 due to my recent diagnosis and surgical treatments needed for my CVST Brain clot, appeared in the “Cuttings” Section. I am so grateful for having the opportunity to have my appeal published  globally and spread awareness of my rare genetic disease, Ehlers-Danlos Syndrome & PoTS. A huge thanks to ‘Upstream’ newspaper and to those who made this get published happen!
Continue reading “Appeal Published in ‘Upstream’ Global Oil & Gas Newspaper!”

MAY: Ehlers-Danlos Syndrome Awareness Month

May is dedicated to Ehlers-Danlos Syndrome (EDS) Awareness month, when everyone across the world with or without Ehlers-Danlos can come together and help spread awareness to the medical world of this invisible disease, help educate the public, and help donate towards further research to find a cure and understanding for this varied “zebra striped” community. Please click: ‘Ehlers-Danlos UK’ Charity to see how you can help contribute to “making our invisible visible”. With no action, there will be no change. There are still many people who are suffering from EDS but are undiagnosed/misdiagnosed due to lack of awareness in the medical and public community. You can help change this for the better by sharing my story and telling people about what it is. Do something positive to make change happen!

Continue reading “MAY: Ehlers-Danlos Syndrome Awareness Month”

“When you hear hoofbeats, think horses, not zebras” – though they may be rare…zebras do exist. Today, Monday 29th February is Rare Disease Day. This is a very special day to me to help promote awareness of the challenges, hopes and needs of those who are living “zebras”.

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