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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Jane Green Chair and Founder of SEDS

In 2018 founded SEDS as she felt there was more need for local specialised support and awareness.

Jane studied then worked in education all whilst bringing up her children who have disabilities.

During this time, she suffered with various odd injuries and illnesses.  Advice was that the injuries weren’t that bad, and she was “fine”, so she had to turn down the chance to do her Doctorate due to these issues with her health, but carried on working.

 

This then led to her being a Specialist teacher at St Piers, an Advisory specialist teacher at WSCC, the lead education support at certain Charities and the DfE and strategic Assistant Headteacher. 

Unfortunately, her continued health problems and being labelled ‘bendy’, she was diagnosed with chronic fatigues syndrome (CFS) and fibromyalgia, sadly she reluctantly had to stop her career in 2015.  Only then she did she receive a diagnosis of hEDS but was immediately discharged as there was no defined treatment protocol. 

At this time, she was quite ill, but she felt there must be others out there like her.  This left her and her family frustrated as there no answers or pathway, all she and her family knew is it was affecting her life dramatically. She felt this was unfair and then looked into EDS and the support available both nationally and locally.

She has then volunteered and worked with national charities but realised there was this need for more local support so SEDS was born.

Since then SEDS has grown into the group actively supporting people in Sussex with SEDS/HSD in living a more fulfilled life

 ‘The biggest challenge has been getting ill people with EDS and co-occurring conditions to volunteer as we are totally unreliable with our health.  That has been an occurring theme but I am bowled over by our current volunteers, committee and Board members.  Everyone can help just by sharing what we do and we link in with other groups and organisations'.

 

MA. Ed. (Leadership and Management) Autism

Adv. Dip.Ed. (Child Development)

PGCE Sec. QTS

BSc. (HONS) Psych. OU