Help save Emily’s life

Due to the nature of her condition, it is difficult for Emily to coordinate fundraising alone. If you would like to support with fundraising in any way/have any ideas, please message me on Facebook:

My wonderful, kind and funny friend Emily desperately needs your donations to receive urgent medical treatment abroad, without which she faces severe and irreversible damage and disability.

Emily suffers from Ehlers Danlos Syndrome (EDS), a rare genetic condition which wreaks havoc on connective tissue (tissue which supports and structures skin, tendons, ligaments, blood vessels, internal organs and bones) and collagen (which is basically the body’s internal scaffolding and supports the whole body). As a result, the destructive effects of Ehlers Danlos on the body are almost limitless.

Emily’s EDS has become debilitating. She has been diagnosed with many serious co-morbidities. The collagen in her neck is unable to support her spine, creating instability in her vertebrae and skull, as well as compression her brainstem. In effect, the lower part of her skull is sinking into her spine.

Emily’s brainstem has been damaged to the point where her body is shutting down. Extreme fatigue, periods of paralysis, and loss of vision are part of her daily reality.

As a result, Emily now finds herself largely bed-bound with little quality of life; she is regularly in and out of hospital and suffers from excruciatingly painful symptoms which threaten irreversible physical disability and potentially death. She is quite simply living in a nightmare.

Patients with EDS require extensive treatment programs to manage these multi-varied symptoms and co-morbidities. Emily has spent years researching available treatments that are suitable for her needs. She now has a comprehensive treatment plan and hopes to access these procedures that will stabilise and improve her condition as soon as possible. 

However, as a rare disease, EDS is quite shockingly under-researched and neglected in the UK. Leading expert Professor Rodney Grahame stated, “no other condition in the history of modern medicine has been neglected in such a way as Ehlers-Danlos Syndrome”.

The lack of treatment in the UK means that Emily and others like her are left in the terrifying position of fundraising for costly innovative treatments abroad if she has any hope of surviving. With this in mind, I urge you to give anything you can.

Emily has persevered through so much already, managing to gain a place at university despite her illness. She has creative ambitions, with a passion for writing and film. Furthermore, being exposed to the injustices and neglect suffered by so many EDS patients in the UK has inspired Emily to campaign for better treatment for Ehlers Danlos patients.

But unless Emily receives urgent treatment herself, this future will be impossible. Any donations, however small, will be very appreciated. If you can’t donate, please share. Thank you for reading and for any generosity.

Emily’s treatment plan:

Emily has done extensive research. The treatments she is planning are the least risky and therefore the most cost effective, as getting the wrong type of intervention can create complications that can lead to further disabling damage and require further intervention. 

Emily hopes to use the fundraising money for consultations and specialist treatments abroad to stabilise her spine, such as the PICL procedure which is a pioneering, regenerative treatment in Colorado that targets the ligaments in the spine to create stability, as opposed to the more risky and invasive fusion surgery. She also requires lower spinal treatment in Barcelona, and complex jaw procedures in the UK.

We will document Emily’s treatment journey and provide updates of specific treatment details and costs as things develop.

Mind Body EDS 
Ehlers Danlos 
Zebra Network 
Zebra Network CCI 
Neurological and spinal EDS manifestations 
Ehlers Danlos Autonomic Dysfunction 
What is EDS brain and spine 
Jugular vein compression 

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Rachel Parry 
London, UK