Symptomatic Hypermobility,
Ehlers-Danlos Syndromes and
Hypermobility Spectrum Disorders
Intimate lives, neurodivergence, and Symptomatic Hypermobility
What is Symptomatic Hypermobility
Symptomatic Hypermobility is a term coined for those who experience symptoms of the multi-systemic issues associated with conditions like Ehlers-Danlos Syndromes and Hypermobile Spectrum Disorder, but have no diagnosis. Diagnosis can be very hard to find, as very few doctors or medical practitioners are trained in these conditions and we are often diagnostically overshadowed, misdiagnosed or under diagnosed along with Fibromyalgia, Chronic Fatigue Syndrome (CFS) / M.E. Hypermobility can have an impact on our intimate lives in many ways. SEDs Connective have produced an amazing toolkit where you can find everything you need to know.
SEDSConnective Toolkit
SEDSConnective is the only neurodivergent physical health charity in the world and is transforming ND health wellbeing in the communities and beyond.
We are delighted to share the SEDSConnective toolkit. Download it, view it in our PDF viewer, or visit the SEDSConnective web page directly
We want people with Symptomatic Hypermobility and Neurodivergent identified groups, to have equal opportunities for body and brain health in education, health arenas, social care, employment and transport accessibility.
SEDSConnective improves and actively supports the lives of people with Symptomatic hypermobility, EDS (Ehlers-Danlos Syndromes), Hypermobility Spectrum Disorders (HSD) , JHS and Neurodivergence (primarily Autism, ADHD, Dyspraxia, Tourette's syndrome) and associated conditions.
Get in touch with SEDSConnective
Website: www.SEDSconnective.org
Email: general@sedsconnective.org
Twitter: @SEDSConnective
Linktr.ee: https://linktr.ee/Sedsconnective
Instagram: instagram.com/sedsconnective
LinkedIn: Here
YouTube: Here
Public Facebook Page: Here
Closed Facebook group: Here
What SAAIL participants say
What our participants say
"Ehlers-Danlos Syndrome. So it, uhm, a connective tissue disorder, so it means I’m hyper mobile and my joints click. They can click out of place, uhm slight pause yeh. It means I’m in a lot of pain and I’m generally quite tired. Uhm, in terms of intimacy and being touched there are some areas that just hurt. You know, generally. And people forget. I know my partner forgets he says I quite forget how fragile you are. I said, how can you forget? I’ve told you so many times and there was one point where he was – he’s very tall, got limbs like a, you know, giraffe. He’s got these elbows that seem to be everywhere and he got me with the elbow here once. And, and I bruise easily as well, so this was huge, huge bruise here". (Jess ,30, Female, Pansexual, Mixed Race)
"A lot of autistic people are hypermobile, many even reaching diagnostic thresholds for e.g. Ehlers Danlos (see research from Dr Jessica Eccles for example). These conditions can affect reproductive tissue and organs too (see example Adam Sherman, RN, BSN - The Effects of EDS and HSD in Males - YouTube). Flagging these up to autistic folks would be doing some of them a favour". (Focus group participant)