Help save Emily’s life
Donation protected
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: https://m.facebook.com/rachelparry
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’s condition
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, such as Craniocervical Instability (CCI). This is a condition where the ligaments in her neck are unable to support her spine, creating instability in her vertebrae and skull. As a result, symptoms such as agonising pain, memory loss and severe brain fog are part of her daily reality.
Emily has spent several years exhausting all possible avenues for managing and containing the symptoms, so she can continue to try her best to live, to study, to pursue her goals. Unfortunately, EDS is shockingly under-researched and neglected in the UK healthcare system. This has left her masking and managing her symptoms with increasingly high doses of toxic medications, which in turn are causing their own cascade of consequences. Essentially, her current treatment plan is unsustainable and she has no option but to address the root cause head-on.
The lack of treatment options in the UK means that Emily and others like her are left in the terrifying position of fundraising for costly innovative treatments abroad.
Emily’s plan
Emily plans to travel to the USA where more hopeful, innovative treatments exist. One option is fusion surgery, which involves using a metal screw to fuse together the unstable vertebrae. Although for some this is the only viable option, it is incredibly invasive and poses significant risks to those with EDS because of their fragility. Emily is therefore raising funds for a pioneering alternative treatment in Colorado, known as the PICL procedure. During the procedure, doctors harvest stem cells from the bone marrow in the hip, process it and then re-inject the stem cells into the injured upper cervical area which helps to stabilise it without invasive surgery.
Despite all of her suffering, Emily is full of hope, determination and ambition. We are optimistic about the innovative treatments provided by the Centeno Shultz clinic and the many inspiring success stories we have witnessed - with many people in a similar condition to Emily (or worse) experiencing life transforming results through the procedure. Emily is determined to continue her training / studying and become a psychotherapist, to use her experiences of adversity and pain to help others, as well as to campaign to change the landscape of medical care for EDS patients, so others are not left to suffer as she is.
Links:
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
Links:
Organizer and beneficiary
Rachel Parry
Organizer
England
Rachel Parry
Beneficiary
