Anna Kennedy’s guest on ‘All things Autism’ was Jane Green​, please click here to listen to these amazing shows!

SEDSConnective is the first expert by experience led neurodivergent and symptomatic hypermobility charity.  Symptomatic hypermobility is the term used when you can’t get a formal diagnosis for Ehlers-Danlos syndromes or Hypermobility Spectrum Disorders or Joint Hypermobility syndromes.

We have differences in our connective tissue and the protein collagen which leads to more laxity than the general population. Our connective tissue surrounds our joints, tendons ligaments, our Autonomic nervous system which affects our head, brain (migraines, jaw pain swallowing, Gastrointestinal issues, breathing issues other organs like stomach, bowel bladder.  

We are also more prone to allergies both direct and indirect, so non-food related and skin rashes.  We provide specialised positive activities, therapies, and hobbies creatively as we know what we need but with experts helping some of whom are also symptomatic.  Most of all we bring belief as so often particularly girls and women are predominantly affected and disbelieved to be both autistic historically and ill or disabled. 

I left school at 16 considered dim and a hypochondriac. I had children both ill and one very early dx autistic, ADHD dyspraxia and LD.  I decided I had to help them not be excluded.  I started learning starting despite only 2 qualifications to do a degree in Psych.  

This led to more degrees, awards, and a career but sadly although I knew i was autistic, I didn’t mask, i knew I would not get one as practitioners are taught autism is historically male stereotypical biased and so is the research. I had was lead advisory autism teacher for the Local Authority, Lead for the Nat. Autism Society and assistant Headteacher.

I had to retire early as had no support and only then received my diagnoses. I was very ill. There is no care pathway for hypermobility unless very rare. About 90% are HEDS HSD. I knew although we were disbelieved there must be others like me.

We are now not only supporting members of all ages but their families as it’s heritable, in health, education, social care, employment and transport accessibility. We are also involved in research and just had our first paper with our advisers on education school attendance and attainment.