Community support

We have a closed member Facebook group Sussex Ehlers-Danlos Syndromes   

An open Facebook page for interested people or professionals at  EDS/HSD at SEDSHSD 

We’re on Twitter too @SEDSHSD.

Also on Instagram Sussex_EDS

Contact us - admin@infosussexeds.org.uk

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About EDS & HSD

Hypermobility spectrum disorder (HSD) and Ehlers-Danlos syndromes (EDS) are complex connective tissue disorders.  Lots of people can be hypermobile without any problems. It is when there are ‘issues with tissues’ that we need to be aware. Unfortunately it has been challenging to get awareness of this disease and get appropriate support. At the moment there are 14 types of EDS and one type of HSD. This might change again in the future.

Diagnosis
 

The EDS Society has a list of the criteria used for diagnosis of all the types of EDS and HSD.

Getting diagnosis via a GP

Discuss the EDS RCGP toolkit with your practice manager or GP to see what symptoms relate to which type of EDS. It is possible to get an HSD or hEDS diagnosis from your GP, but this can vary, if the GP suspects other types of EDS you can be referred. Plus referrals for other symptoms such as suspecting PoTs (postural orthostatic tachycardia syndrome), autonomic dysfunction, further investigations for various injuries, autism, allergies (MCAD/S). If a rarer type of EDS is suspected this is sent for referral as well with accompanying serious symptoms.​

Common symptoms

There are some common symptoms that are diagnosed usually before a diagnosis of HSD/EDS. These are acute and chronic pain syndromes, Fibromyalgia, Chronic Fatigue Syndrome/M.E, osteoarthritis, eating issues and pain, gastroparesis, bowel and bladder issues, Raynaud's phenomenon, allergies (different types can be severe such as anaphylaxis), anxiety and autism.  Plus separate symptoms in EDS/HSD of multiple dislocations, tendon and ligament ruptures, muscle rigidity, spasms, myofascial pain, macro and micro tears. Some people have rarer types that affect the vascular system and heart. Often people with EDS/HSD can have very smooth, thick skin that doesn't age or bruise easily or very fragile, thin skin that bruises and tears easily. 

Recommended book

Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder

by Claire Smith

Fundraising support
We are very grateful to the fundraising support we have had from Healthwatch West Sussex, The Longley Trust, Waitrose community matters, East Grinstead Lions and the Sussex Community Foundation. 
 
Media support
 
We also thank local Radio stations BBC Sussex, Meridian FM, BBC South TV, BBC South East, Crawley Observer, East Grinstead Gazette, Mid Sussex Times, West Sussex County Times and Horsham District Post.