Thanks for taking the time to visit my JustGiving page.

I pledge to shave my folk singer locks as long as my team target of £1000 (£500 for each charity page) is hit by the 16th December 2017.

I have two pages: this one which is for Ehlers-Danlos Support UK and another one which is for NHS Greater Glasgow and Clyde which can be found here:

https://www.justgiving.com/fundraising/Shelagh-McKay-Jones

The deed will be carried out at a Charity Night in the Royal West of Scotland Amateur Boat Club, Greenock, on Saturday the 16th December 2017 the proceeds of which will go to Scotland's three Ehlers-Danlos Support Groups (Glasgow, Edinburgh and Aberdeen) for much needed work with young people struggling to come to terms with diagnosis of Ehlers-Danlos and Hypermobility Syndromes which are lifelong and can be life threatening conditions. These genetic disorders exist from birth and often go hand in hand with many other illnesses including Inflammatory Bowel Disease and Mental Health symptoms but can take an average of 19 years to be diagnosed in Scotland with most patients having to pay for a private diagnosis.

EDS UK is the only UK charity to offer support to people touched by all types of Ehlers-Danlos syndrome.

Ehlers-Danlos syndromes are a group of connective tissue disorders that can be inherited and are varied both in how affect the body and in their genetic causes. They are generally characterized by joint hypermobility (joints that stretch further than normal), skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

The Ehlers-Danlos syndromes (EDS) are currently classified into thirteen subtypes. Each EDS subtype has a set of clinical criteria that help guide diagnosis; a patient’s physical signs and symptoms will be matched up to the major and minor criteria to identify the subtype that is the most complete fit. There is substantial symptom overlap between the EDS subtypes and the other connective tissue disorders including hypermobility spectrum disorders, as well as a lot of variability, so a definitive diagnosis for all the EDS subtypes when the gene mutation is known—all but hypermobile EDS (hEDS)—also calls for confirmation by testing to identify the responsible variant for the gene affected in each subtype.

Nobody should be left to fight on their own. Every person with EDS should have access to the appropriate medical services and care.

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