Jane Green MBE,Chair and Founder of SEDSConnective a neurodivergent and symptomatic hypermobility (Ehlers-Danlos and Hypermobility Spectrum Disorders – HSD) voluntary social mobility charity.
I was diagnosed with what was known as EDS3, now known as hypermobile Ehlers-Danlos Syndrome (hEDS) in 2015, aged 53. It is a heritable and complex connective tissue disorder that affects the whole body and generally, hEDS seems to be more symptomatic in girls, women and non-binary people. My symptoms have included chronic pain, severe allergies (Mast cell activation syndrome), heart palpitations, dizziness, trouble breathing, feeling faint, sciatica, ruptured back discs, migraines, constant vomiting and reflux, muscles spasms, extreme fatigue and stomach bloating (diagnosed as irritable bowel syndrome). I also experienced multiple ligament sprains, dislocations and partial dislocations (subluxations) without trauma. Tests were often negative and therefore no care pathway ensued. I was not believed and called a hypochondriac, so I stopped seeing medical practitioners and felt I needed to ‘mask’ my symptoms, causing me mental trauma.
Autism and hEDS
My autism was also missed. I only received my autism diagnosis in 2016 aged 54, although I had previously self-identified as autistic. For many women and non-binary people, autism is not picked up until later in life, if at all. This is due to a combination of factors, including diagnostic criteria being biased toward a young male presentation, ageism and limited research beyond the male stereotype.
All of this led to a complete burnout, mentally and physically. I felt I had not been heard or managed well which resulted in me having to end my professional career as a leading autism educationalist. I knew I was different and had multiple medical interventions and surgeries but my medical notes would simply say something along the lines of ‘bendy lady’. I realised that others must be in my position but there was no coordinated care pathway for us.
Creating a community
That is when the idea for SEDSConnective began, a community-led group doing it for ourselves, by ourselves. We needed people to believe that our issues (autism, dyspraxia, ADHD and TS, all of which are rarely diagnosed in girls, women or non-binary due to various factors including stereotypical bias) are connected. For some reason neurodivergence co-occurs with hypermobility conditions and we need to join up the dots. There is new evidence-based research for the co-occurrence, but most medical practitioners are not trained in these areas. There is currently no coordinated care pathway for most common hypermobility EDS (hEDS) or Hypermobility Spectrum Disorders (HSD) and such conditions are still rarely diagnosed because medical training barely touches on EDS and hypermobility. There are 13 named EDS and four types of HSD and in children these conditions are rarely diagnosed as most children are hypermobile unless they have severe symptoms or a family history of a rarer type with a confirmed genetic base. This means symptoms displayed by children and young people are often not believed to be physical but caused by mental, emotional or sensory issues only and consequently the physical, sometimes invisible symptoms are rarely diagnosed or supported.
SEDSConnective focuses on both hypermobility syndromes and neurodivergence. We started as a local group but the need was so great we grew across the UK. We are now a leading global neurodivergent hypermobility charity, campaigning to transform the social care, health and educational landscape.
Rare vs. Rarely Diagnosed
A growing evidence base is now demonstrating the link between neurodivergence, hypermobility and pain. Thirty years ago autism was considered rare and primarily identified in boys. It is now found that around 1/100 people in the UK (with increasing numbers of girls, women and non-binary people) are being diagnosed with autism and other forms of neurodivergence. At SEDSConnective, we believe that hEDS and HSD are not rare, just rarely diagnosed, with patients rarely believed.
For too long, those living with rare and chronic health conditions and who are neurodivergent have been seen as too complex and too costly to manage and support, with little to no coordination between the services that do exist and a lack of pathways of care. At SEDSConnective we believe perspective change is urgently needed, where systems of care and support are reconfigured with lived experience and co-ordination at the heart. No one should struggle to receive a diagnosis, nor should they be dismissed with no further care or support post-diagnosis.
Advocating for this has been my passion for many years. I’ve brought up my children (both ill, one also neurodivergent) while working in these areas. I was deeply honoured to recently receive an MBE for services to the neurodivergent community and those with related joint hypermobility conditions including Ehlers Danlos Syndromes. SEDSConnective continues to grow and I also work to bring about the necessary change by sitting on various non-executive Boards in education, health and social care for national and international organisations.
Jane Green MBE
Jane Green, MBE for services to neurodivergent people and those with related joint hypermobility conditions including those with Ehlers-Danlos syndromes in the NYE Kings Honours List.