Fundraiser for treatment of Muswell Hill student's genetic disorder

Emily, 23, is an English literature student who suffers from Ehlers Danlos Syndrome

Emily, 23, is an English literature student who suffers from Ehlers Danlos Syndrome - Credit: Archant

A Muswell Hill student is fundraising for treatment as she battles a rare genetic condition that has left her in chronic pain.  

Emily, 23, suffers from Ehlers Danlos Syndrome (EDS) which weakens connective tissues that provide support to whole body including the blood vessels, internal organs and bones.  

After years of persevering through severe symptoms, Emily’s deteriorating condition is now progressive and life-threatening.

From the debilitating impacts that have changed her day-to-day life including to her spine, vertebrae, skull and brain, Emily now faces extreme fatigue, periods of paralysis, and loss of vision.  

The English literature student has been diagnosed with multiple comorbidities including Chiari malformation, Eagle’s syndrome and craniocervical instability.    


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Organised by Emily’s friend Rachel Parry, the fundraiser will go towards treatments in the UK and for consultations by specialists that help manage the student’s condition.

The crowdfunder will also help pay for private healthcare abroad not currently covered by the NHS. 

To donate visit https://www.gofundme.com/f/life-saving-treatment-for-emily

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