Jane Green, Chair and Founder of SEDS
On 18th June 2018 Jane founded SEDS to increase local specialised support and improve awareness, knowledge and understanding of EDS/HSD and co-occurring conditions.
Jane studied for her degrees late whilst working and bringing up her children who are hypermobile and had issues. Throughout this time she continued to suffer odd injuries, illnesses and pain. She was told the injuries could not have happened and was completely disbelieved so had to turn down the chance to do her Doctorate due to these issues with her health but continued working.
She taught at St Piers epilepsy school, advisory autism teacher at WSCC, lead educationalist at NAS, helped design and led the AET training, DfE and strategic Assistant Headteacher.
Unfortunately, her health continued to decline and after being labelled ‘bendy' she was diagnosed with chronic fatigue syndrome (CFS) and fibromyalgia stopping her career in 2015. Only then she received a diagnosis of EDS3 now hEDS but immediately discharged as there was no defined treatment protocol.
Although very ill, she felt there must be others out there like her who must also be overlooked. After joining and volunteering with the national EDS UK charity she realised there was a need for more local advocacy and support so enthused others to join her and SEDS was born.
Since then SEDS has grown actively supporting people in Sussex with SEDS/HSD in living a more fulfilled life and raising awareness, awards, in transport accessibility, education, social care and of course health. Currently she advises carers' charities locally, education, accessibility to transport at airports, health CCGs, SCI and coproduction steering group member and Trustee at SCIE. Advises on Covid19 and postCovid19 guidances and resources.
‘The biggest challenge has been getting ill people with EDS/HSD and co-occurring conditions to volunteer as we are unreliable with our health. This 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'.
Julie Constable, Treasurer
Julie has been supporting SEDS since its inception in June 2018. Not symptomatic herself she got involved because her sister was diagnosed after many years of suffering. Julie works full time heading up the Insurance and Financial Services department of the Caravan and Motorhome Club in Sussex, having previously worked for large insurers.
Julie lives in Caterham with her husband and is also a Trustee of her local Citizens Advice Bureau and volunteers for Croydon Nightwatch.
MA Ed. (Leadership and Management) Autism
Adv. Dip.Ed. (Child Development)
PGCE Sec. QTS
BSc. (HONS) Psych. OU
Rachael Atfield, Secretary
Rachael is a fellow ‘bendy’ and like many was diagnosed as an adult (early 20’s) with EDS. She spent her childhood and adolescent years being called clumsy and accident prone as was always falling over, walking into things or spraining joints. She received my diagnosis from Professor Graham at UCLH and was quite relieved to discover there was a reason for her bendy joints and unsteadiness. She has had multiple surgeries over the years, including a recent emergency spinal operation on an exploded disc but terms them as fine tuning and maintenance and acknowledges that it’s just part of how she is made.
She has 2 grown up children (24 and 28), and although they haven’t been diagnosed with HSD they have a few hypermobile joints.
She completed her BSc. (HONS) Psych. in 2010 and nearly completed a Masters in Inclusive Special Education. Although currently she works in a special needs school with years R – 11 delivering Speech and Language programmes and interventions.
Linda Secular, Trustee
This is Linda and she has hEDS! She was diagnosed late like a lot of us at the age of 40 and after having 10 surgeries. She is a qualified nursery nurse and teaching assistant currently working in a residential children's home with teenagers in Horsham.
She has two grown up children one with hEDS and one possible EDS plus co-occurring conditions.
Donna Le-bon Olive, Trustee
Donna is a senior community speciality practitioner nurse who has dedicated her nursing career to supporting people to manage the complexities of living with chronic illness. In 2011 her second son was born with difficulties. It wasn’t until he was aged 7 that he was finally diagnosed with an inherited connective tissue disorder and mast cell activation disorder. The road to diagnosis was long and fraught with unimaginable stress affecting the whole family. Donna felt the way her family had suffered because the issues her son had were not understood and therefore dismissed and not believed led her to reach out and find ways she could use the experience in a positive way to help action change for future generations. She is particularly keen to use her clinical experience to support the community and also to work to help develop strategies for schools to better support children and families with EDS/HSD.
RGN, BSc (HONS) Community Specialist Practitioner