A NEW medical charity, Mind Body EDS, has been launched by a young woman from Farnham to provide financial support to individual sufferers and greater understanding of Ehlers-Danlos syndromes (EDS) by the medical community and general public.

EDS is a group of disabling and potentially life-threatening genetic conditions which affect an estimated one per cent of the UK population. However, this number may be significantly understated as latest clinical studies show that a failure to identify EDS has meant that many sufferers go undiagnosed.

The charity has been founded by Laura Sylvester, 25, a former pupil of South Farnham School and chorister with Farnham Youth Choir, whose symptoms went unrecognised for more than a decade until she was finally diagnosed as having EDS by a world-leading rheumatologist, Professor Rodney Grahame, four years ago.

During this period, Laura’s condition had deteriorated and become life-threatening. With no specialist treatment available in the UK, her only choice was to go to USA for life-saving brain and neurosurgeries, which meant raising £75,000 in just three weeks. Subsequent treatment has increased this figure to over £300,000.

“Living without an accurate diagnosis for the majority of my life has put a tremendous strain on the whole family,” Laura told the Herald.

“With a lack of funding and expertise available on the NHS or elsewhere, we were then faced with the huge financial burden of having to go abroad for treatment.

“As a result, when I woke from my first neurosurgery, I wanted to do something to ensure that others did not suffer in the same way from a failure to diagnose EDS early. The result has been the creation of the Mind Body EDS charity.”

Laura’s charity aims to:

?Raise awareness amongst the public and medical community about the range of Ehlers-Danlos syndromes and so enable early diagnosis and treatment.

? Financially support individuals and families, enabling more rapid access to limited UK EDS specialists capable of diagnosing and treating the conditions.

?Financially support research activities into the causes of all types of EDS, potential treatments and cures to enable patients to benefit from a better quality of life.

Mind Body EDS chairman Jacqui Burke points to the fact that many EDS patients show similar symptoms to myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) for example, with the result that misdiagnosis leads to ineffective treatment and a worsening of the condition.

“Laura is also a perfect example of many EDS sufferers who may look healthy on the outside,” she said, “which makes this disorder frequently ‘invisible’ even though it becomes chronic, disabling and ultimately life-threatening.

“With the launch of the Mind Body EDS charity, for the first time sufferers have access to essential financial support from the very earliest stages of their diagnosis and throughout their EDS journey.”

Laura is currently recovering from her sixth pioneering brain surgery which, unlike her previous procedures which were all performed in the USA, took place at Addenbrookes Hospital, Cambridge.

Laura continued: “The good news is that we have found a specialist brain surgeon here in the UK that will be conducting the first of a series of six pioneering brain surgeries to fix the blood flow in my neck and brain over the next few years.

“I’ll be the first patient in the UK undergoing this series of treatment which is nerve-wracking but I’m grateful to have it here instead of needing to travel.”

Laura has also resumed her masters degree in petroleum geoscience at Imperial College London and will be graduating in September, and last week she launched a #MyEDSDiagnosis campaign on Instagram calling on other EDS sufferers to share the number of years it took them to be diagnosed.

For more information about Laura’s charity, visit the website www.mindbodyeds.org.uk .