Search

mind, body & EDS

| living with a rare, invisible, genetic disease |

Category

Chronic Pain

“Hitting the wall” – London Marathon

I believe that there is power in suffering and chronic illness because it’s in these times of pure vulnerability that we learn how to overcome what seems the ‘impossible’, not just for ourselves but for others too.

By experiencing our own pain of “hitting the wall”, we can understand and care for the pain of others. In our chronic illness journeys, we encourage each other to keep fighting, to continue learning, to never give up – but we rarely talk about “the wall”.

Continue reading ““Hitting the wall” – London Marathon”

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 •

The Power of Thought

 

Whenever I share my medical journey, I repeatably am faced with, “I don’t understand how you’ve survived; I don’t get how you were able to relearn how to walk/read/write again; how have you made the impossible, possible?” So here it goes, I’m going to share a part of my truth with you and how I’ve been able to get to where I am today in the hope of enabling others in all walks of life…

Continue reading “The Power of Thought”

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”

‘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’.”

Continue reading “‘Patient Story’ Speech”

Featured post

UPDATE: First Post-Op Visit Results

My Father and I returned from our three week visit to Washington D.C. and Virginia at the beginning of December. The three weeks were filled with many post-op appointments, check-ups, physical therapy rehabilitation, vision therapy rehabilitation and even a White Tie Gala event! To say it was a busy time for us is an understatement – only now I am beginning to feel the exhaustion and experiencing a ‘flare up’.

Continue reading “UPDATE: First Post-Op Visit Results”

Change: The Battle of Acceptance

14633050_10209091299893921_4836675911598824683_n

“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 •

Continue reading “Change: The Battle of Acceptance”

“No Pain, No Gain”

September is ‘Pain Awareness’ month and highlights the importance of spreading awareness of chronic pain and reducing the stigma that people with chronic pain face both in our healthcare system and society. It is also ‘Invisible Illness’ week and I would like to emphasise that there are hundreds of millions of people in the world with invisible illnesses that feel misunderstood by everyone. Unfortunately, living with Ehlers-Danlos Syndrome means living with chronic pain – which is one of many common symptoms. This invisible disease comes hand-in-hand with invisible chronic conditions that will follow us forever. All we need is for people to understand and accept us.

Continue reading ““No Pain, No Gain””

Blog at WordPress.com.

Up ↑