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 support to receive urgent medical treatment abroad, without which she faces severe and irreversible damage.
Emily’s Condition
Emily suffers from Ehlers Danlos Syndrome (EDS), a genetic condition that wreaks havoc on all the connective tissue in the body. As you can imagine, this tissue is everywhere from skin, tendons, and ligaments, to her internal organs and bones. This essentially means that the body’s internal scaffolding - everything that supports the whole body - is faulty. As a result, the destructive effects of EDS on the body are limitless. Simple tasks like reading, walking, or even sitting upright can become painful or impossible
Emily’s EDS has become debilitating. Like many others, she has been diagnosed with a range of serious co-morbidities. One of the most severe is 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, and to pursue her goals. Unfortunately, EDS is shockingly under-researched and neglected in the UK healthcare system. Leading EDS expert Professor Rodney Grahame has named it the most neglected condition in modern medicine. This lack of support for EDS patients is even being debated in Parliament and the leading EDS UK charity is campaigning with their #EnoughIsEnough movement to demand change.
Unfortunately, change takes time and with the way the system currently stands Emily, and many others like her, have been left with no access to treatment and instead must manage their symptoms with increasingly high doses of strong pain killers. These in turn cause their own consequences. Essentially, her current treatment plan is unsustainable and she has no option but to crowdfund for basic care.
The lack of treatment options in the NHS and the UK means that Emily and others like her are left in the terrifying position of fundraising for costly treatments at home and abroad.
Emily’s plan
Emily plans to pursue a range of treatments that have been proven in other patients to provide relief and prevent further complications from her EDS. This includes basic medications that the NHS is unable to provide which are very costly to procure privately. She also needs consistent access to expensive specialists like osteopathists, acupuncturists, and EDS informed physiotherapists. These are crucial tools to help manage Emily’s pain and strengthen her body. It is not possible for her to receive these treatments without raising significant funds.
Furthermore, Emily is looking to pursue treatments like Proletharpy and PRP, a regenerative medicine that tackles the instability in her joints that can help with strengthening and stabilising her body to prevent endless surgeries and dislocations that could leave her completely incapacitated. She will also require access to cutting edge minimally invasive surgical procedures that require travel abroad.
Despite all of her suffering, Emily is full of hope, determination and ambition. We are optimistic about the combination of treatments providing much needed relief, as well as preventing further complications in the future. Emily is determined to continue her training 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.
Your donation will help Emily take back control of her health and her future.
Links:
Organizer and beneficiary
Rachel Parry
Beneficiary