mind, body & EDS

| living with a rare, invisible, genetic disease |



Third Critical EDS Neurosurgery Appeal Video

“You gain strength, courage, and confidence by every experience by which you really stop to look fear in the face. You are able to say to yourself, ‘I lived through this horror. I can take the next thing that comes along.'” Eleanor Roosevelt

My Second Critical Lifesaving EDS Neurosurgery: Tethered Spinal Cord Syndrome 17th February 2016



Since announcing the success of my complex lifesaving craniocervical fusion neurosurgery on the 13th January in Washington D.C., I have been undergoing further clinical tests, X-rays and MRIs of my lumbar spine. The reason for this is that I have been experiencing differently-sourced neurological symptoms that are not linked with my first surgery or neck injuries.

Talented Chefs at the Greenbelt Marriott Hotel!

As you all know from reading my “12 Facts About Me” , one of the struggles I have with my EDS and PoTS is dealing with a forever ending list of intolerances to food Continue reading “Talented Chefs at the Greenbelt Marriott Hotel!”

My Hero: The neurosurgeon who saved my life

It’s about time for you all to recognise and honour the most remarkable talented man, who I can call “my hero”:  Dr. Fraser Henderson. If it wasn’t for Dr. Henderson’s extraordinary and exceptional neurosurgery skills, I would have not made it alive through the neurosurgery Continue reading “My Hero: The neurosurgeon who saved my life”

Discovering D.C.

After a nine hour flight full of turbulences on Wednesday, we (my mother Jayne and I) have finally settled and ‘found our feet’ on the other side of the ‘pond’. Today was our first day of being typical tourists in Washington D.C. Continue reading “Discovering D.C.”

Critical Lifesaving Neurosurgery Appeal

Since being diagnosed with Ehlers Danlos Syndrome (EDS) and PoTS (Postural Tachycardia Syndrome) in 2014, my muscles in my neck have become very unstable. This has led to dislocation/subluxation of my vertebrae, disruption of my spinal cord ligaments, and compression on my cerebellar tonsils and brain stem.  Continue reading “Critical Lifesaving Neurosurgery Appeal”

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