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mind, body & EDS

| living with a rare, invisible, genetic disease |

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Awareness

Mind Body EDS Charity Promo Video Launch!

🌟The official launch of @mindbodyeds Charity Promo Video! 🌟

Invisible illness is the very definition of hell. Ehlers-Danlos syndromes are a steep learning curve, and the only way in which to climb, is to have hope for what the future could bring. Because there simply is nothing else. There is no cure, yet.

In actively spreading education and awareness, the goal of our charity is to bring hope.
By providing financial grants and support to EDS sufferers, the goal of our charity is to bring relief.

Through supporting medical research, the goal of our charity is to bring resolution.
Mind Body EDS hopes to be ‘a gateway of hope’, to not just those of us with Ehlers-Danlos syndromes, but also for the future generations of zebras to come.

It’s time for us to be heard. It’s time for us to be believed. United, we stand together and ask you to join us in this battle together, making our invisible, visible 🦓💫🙌🏼

Make a true impact today by donating to our Virgin Money Giving London Marathon 2019 page – help our runner, John Thompson, to cross the finish line!

• Thank you to The Met Film School from the bottom of our hearts for turning our vision into a reality. We are so grateful for your incredible dedication and hard work helping us fulfil our charity’s mission •

Reflection on current struggles in life

Today has been one of those days where I doubted myself over a million times. The last few months I’ve felt this way for completely valid reasons. I’m not saying this for sympathy – I’m saying this for reality – to show you that on the inside I’m just like you. Yes, I may be smiling on the outside, but I’m not invincible. In all honestly, I don’t always have it all together and still have moments when I focus on the difficult parts of life.

Recently I’ve been hit with a lot of disheartening and disappointing news relating to my health (new diagnoses/more surgeries), my graduate job falling through which consequently meant my moving back to independent living in London didn’t happen – this domino effect has caused a tremendous impact, leaving me feel lost and full of grief.

It’s naturally re-opened a lot of insecurities I once had that I’d put to bed a long time ago through many years of CBT (cognitive behavioral therapy), trauma and pain management therapy. Truthfully, I’ve had a lot of days this past month where I’ve felt like I’m not enough. Where I’ve felt like giving up. When I’ve questioned myself and doubted my ability to juggle all areas in my life. I admit that I’ve found this difficult to comprehend because my ‘life plan’ has just crumbled in front of me – or so I thought.

Recognising these thoughts and feelings doesn’t mean you’re failing – it means you’re LIVING. I’m not saying this for sympathy – I’m saying this for reality. We’re not invincible.

As humans, we tend to live our lives in the “fast lane” so forget to take the time to really stop and honour how far we’ve come and accomplished. We tend to reach a goal and then fill our brain with worry about how we’re going to accomplish the next, and so on.
It’s learning the ability to switch your mind from “what’s going wrong” to “what’s going right for me?” mindset. Reminding yourself that you’re doing the best you can, that you’re really living ‘life’ for what it’s worth.

So continue to turn the page, be motivated, be curious because the biggest mistake you could ever make is to live life like you’ll get another chance to experience it all again.

Be open to new opportunities and change that may cross your path unexpectedly, because maybe everything you’ve lived through was all meant to take you to this point; giving you the courage to take the leap of faith, coming to terms with who you are and who you want to be.

Before you give up, learn to make up your mind about what YOU want out of life. Because you’ve already survived everything that has been thrown at you so far, and you’ll survive it again and again.

It’s time to stop letting our minds play games and begin living our lives through truth, gratitude and appreciation; to be proud and honour the path that got you to today 🙏🏼🦋💫 • Laura Lee •

‘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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