Charlie's Chair

We are raising money for our family member Charlie who is suffering from EDS (Ehlers-Danlos Syndrome) so that she can purchase a motorised mobility scooter. This will greatly improve her quality of life and our goal is to raise the money by Christmas 2018. 

Charlie’s story

Charlie has always had mild health problems but managed to lead an active and unaffected life until 2014 when she became seriously ill and had to stop working and studying. When she was 24 years old and living with her partner Oscar in London, working as a teaching assistant and studying part-time for her Masters degree, Charlie was hospitalised with a Pulmonary Embolism. Following this she became ill with multisystemic symptoms and had to move home to live with her parents in Devon. Over the past four years, after three more hospital admissions, an operation, over 20 procedures and scans she has been diagnosed with Endometriosis, Gastroparesis, Gastrointestinal Tract Dysmotility, Chronic Fatigue, Mast Cell Activation, Postural Tachycardia Syndrome and finally in February of this year, Hypermobile Ehlers-Danlos Syndrome.

Ehlers-Danlos Syndromes are a group of rare genetic disorders that affect multisystems in the body and can cause numerous associated illnesses and complications. There is no known cure and treatment
focuses on improving quality of live and preventing serious complications. As there is a lack of awareness of these disorders and very few EDS experts working in the NHS it can take decades to get a correct diagnosis. 

Due to the poor resources and misunderstanding of these illnesses, the lack of appropriate and timely treatment can cause avoidable disability and life threatening complications. 

Professor Rodney Grahame a Rheumatologist and one of the world’s leading experts on EDS,having worked with the disorder from the 1960’s said “no other condition in the history of modern medicine, has been neglected in such a way as Ehlers-Danlos Syndrome” and thus remains a highly misdiagnosed and untreated illness.

EDS and the various associated illnesses Charlie lives with cause daily pain, extreme fatigue, mobility issues, daily joint subluxations, spinal instability, partial bowel failure and many more debilitating symptoms. Although she has been diagnosed, her health care has been patchy and she is still awaiting a follow up consultation with an EDS specialist to discuss her future. 

Significantly and rather worryingly, most doctors she sees are unaware of the existence and implications of EDS. Along with learning to live well with her illnesses, Charlie’s goal is to spread awareness of these illnesses in order to improve treatment.