Ehlers Danlos Syndrome Links
‘Coffee Bar’ by John Hoyland, 1955.
The Hypermobility Syndromes Association – A British charity offering practical support and information for anyone with any of the hypermobility syndromes or people involved in their care. They also have a forum page.
Ehlers-Danlos Support UK – A British charity which provides support, advice and information for people with Ehlers Danlos Syndrome. They make a range of educational booklets and also have a Facebook page.
The Ehlers-Danlos Society – A non-profit organisation with global membership. The ED Society creates resources for people with EDS, funds research and provides a network of support and communication.
PoTS UK – PoTS UK began as a Facebook group to bring together people with POTS in the UK to provide mutual support. They now have their own website providing current evidence based information about POTS. All medical information on their site is approved by medical advisors.
STARS – Syncope Trust And Reflex anoxic Seizures. A UK charity which aims to ensure that anyone presenting with unexplained loss of consciousness receives the correct diagnosis, the appropriate treatment, informed support and sign posting to the appropriate medical professional.
Dysautonomia International – They aim to raise awareness and provide accurate information for both the medical community and the general public about all forms of dysautonomia. They also raise funds for research aiming to find cures for dysautonomia.
DINET – Dysautonomia Information Network. Their mission is to raise awareness of autonomic nervous system dysfunction and to promote dysautonomia education, support and networking.
Blogs I follow
Cook Like Jamie – Making Eating In Feel Like Dining Out.
Deliciously Ella – Ella Woodward greatly improved her POTS symptoms with a natural food diet, then started a blog…
‘Saffron Medusa’ by John Hoyland, 2010.
PINNT – A support group for people receiving artificial nutrition.
John Hoyland – A few years ago I spent several weeks on the same hospital ward as a modest, friendly and funny man, who turned out to be a very well known abstract painter. Mr Hoyland sadly died a few weeks after I left the hospital. His wife Beverley has since started a great website about John Hoyland’s amazing career spanning six decades.
A Film Made By Dom – An old school chum of mine, Dom Currie, makes great short films and sketches. His ‘De Niro does Star Wars‘ sketch has been seen over 96,000 times, why not add one more? – Dom also has a MySpace site. My favourites are ‘Mrs Baxter’ and ‘Incomprehensible Blues’.
40th Birthday Film – My family and some friends made an amazing film for my 40th birthday, a collection of birthday messages and sketches directed by Dom Currie. Thank you again to everyone who contributed. One of the many highlights was an extraordinary Lego animation made by my childhood best buddy Mike Reynaud. I never tire of watching it. It amazes me and makes me smile every time.
Frantic Assembly – My bro in law, Scott Graham. – Frantic Assembly creates thrilling, energetic and unforgettable theatre. The company attracts new and young audiences with work that reflects contemporary culture. Vivid and dynamic, Frantic Assembly’s unique physical style combines movement, design, music and text.
Suzi Bowles Photography – Contemporary lifestyle family, child and newborn photographer based in Ashtead, Surrey. You can also find Suzi on Facebook.