Emily’s EDS Journey

Emily is aged 20 from London and suffers from Ehlers Danlos Syndrome - a lifelong condition that affects connective tissue in the entire body, causing constant pain.

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Emily is aged 20 from London and suffers from Ehlers Danlos Syndrome – a lifelong condition that affects connective tissue in the entire body, causing constant pain.

A year ago Emily was diagnosed with a very significant Chiari Malformation, which means the lower part of her brain is herniating through the opening at the base of her skull. She was also diagnosed with Cranio Cervical Instability, meaning the spine in her neck is too weak to hold the weight of her head.

This is causing increasingly severe neurological symptoms, including problems with her vision, hearing, memory, brain function, and debilitating pain. This is unrelieved by medication and has resulted in multiple hospitalizations.

Aside from the physical and psychological pain caused by these conditions, their rapid progression indicates the need for urgent intervention, as untreated this can cause seizures, paralysis and even death. This is especially unmanageable combined with the other chronic symptoms of EDS, making daily life unbearable for Emily.

EDS, and its comorbidities, are severely under-researched and under-treated. The lack of knowledge, and provision on the NHS, means diagnosis and treatment is often sought privately. This is particularly lacking in terms of chiari malformation and CCI, where specialist surgery is only available in Barcelona.

The lack of provision on the NHS means that Just4Children will need to fundraise for travelling costs, consultations and investigations to decide the type of intervention needed and how urgently.

Emily has persevered through so much already, but unfortunately her condition increasingly makes the present unbearable and threatens to take the future she has worked so hard for.

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