About symptomatic Hypermobility, EDS, HSD and JHS

Ehlers-Danlos syndromes (EDS) and the closely related Hypermobility Spectrum Disorder (HSD) are complex heritable 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 these disorders and get appropriate support. At the moment there are 13 named 'types' of EDS plus the closely related HSD. This might change again in the future.

By kind permission of Liz Argall
More details can be found via the below charities and organisations:

The EDS Society has a list of the criteria used for diagnosis of all the types of EDS and HSD on their website. For a child or younger person the 2021 with content led by our Chair Jane Green   www.theschooltoolkit.org also has links to specialists and resources aimed at schools. 

Getting diagnosis via a GP

Discuss the EDS RCGP toolkit now hosted online 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  (genetic) you can be referred. Plus referrals for other symptoms such as suspecting POTS (postural orthostatic tachycardia syndrome), autonomic dysfunction, further investigations for various conditions Autism, ADHD, Dyspraxia.  Also injuries, allergies (MCAD/S). If a rarer type of EDS is suspected this is sent for referral as well with accompanying serious symptoms.​ We suggest getting as much family medical history as possible.

There are some common signs and symptoms that are diagnosed usually before a diagnosis of HSD/hEDS. These are acute and persistent pain syndromes, Fibromyalgia, Chronic Fatigue Syndrome/M.E, osteoarthritis, eating issues, Gastrointestinal Issues,  gastroparesis, bowel and bladder issues, Raynaud's phenomenon, anxiety, allergies (different types can be severe such as anaphylaxis) and the emerging co-occurrence with autism/neurodivergence.  Plus separate symptoms in EDS/HSD/JHS 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, heart or brain. Often people with EDS/HSD can have very smooth, thick skin that is young looking 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 The National Lottery Community Fund, Axis, Healthwatch West Sussex, The Longley Trust, East Grinstead 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.