Ehlers Danlos Syndrome Webinar

20.00

Tuesday 18th Aug 6.30 to 8.30pm GMT

If you can’t make it live then sign up to receive a recording which you can watch in your own time.

Ehlers Danlos Syndrome/ Hypermobility is often missed as a separate diagnosis in Autistic children and adults. We are raising awareness much needed awareness of EDS/ HSD

Who is this suitable for?

Autistics, parents, Occupational Therapists, health professionals, Speech & Language therapists, mental health professionals, teachers and SNA’s.

Content: 

  • What is EDS/ HSD
  • Recognising signs & symptoms
  • Recent Research
  • Difficulties getting a diagnosis
  • Personal Experience and linking this to similar experiences of others leading to PTSD
  • POC systematic racism creating another layer of difficulty in accessing a diagnosis
  • Advice for adults: communicating with doctors
  • Advice for parents
  • Advice for teachers

Our speakers are Jane Green and Nikki Hughes

Category:

Description

Tuesday 18th Aug 6.30 to 8.30pm GMT

If you can’t make it live then sign up to receive a recording which you can watch in your own time.

Ehlers Danlos Syndrome/ Hypermobility is often missed as a separate diagnosis in Autistic children and adults. We are raising awareness much needed awareness of EDS/ HSD

Who is this suitable for?

Autistics, parents, Occupational Therapists, health professionals, Speech & Language therapists, mental health professionals, teachers and SNA’s.

Content: 

  • What is EDS/ HSD
  • Recognising signs & symptoms
  • Recent Research
  • Difficulties getting a diagnosis
  • Personal Experience and linking this to similar experiences of others leading to PTSD
  • POC systematic racism creating another layer of difficulty in accessing a diagnosis
  • Advice for adults: communicating with doctors
  • Advice for parents
  • Advice for teachers

Our speakers are Jane Green and Nikki Hughes

Jane Green

Awarded the South East Open University Regional Award for outstanding achievement and dedication in her Open University work’ and

Adult Learner Award  ‘in celebration of your remarkable achievement in learning and recognition of your inspiration to your tutors and colleagues 2006

2019 Winner Local Hero Crawley

2019 BBC Sussex, Surrey, NE Hants Community Heroes Carers runnerup

2019 Lifetime Achievement commended Applaud Awards

Carer Trustee for Local CSWS 2016

Co-production steering group member SCIE 2016

Sussex Ehlers-Danlos Hypermobility support group Founder and Chair 2018

First autistic SCIE Trustee 2019

Many autism conferences incl. professional as  speaker

Epilepsy autism conference

Autistica Conference publication health happier lives – mentioning hypermobility for the first time!

Speak regularly on media BBC tv and radio plus local radio and Channel 5 and press. Filmed for OU and for Brighton and Sussex Medical School autistic symposium ‘Challenging Stereotypes’ Published on Ed.psyUK and TES on hypermobility.

Speak at medical conferences as lay advocate.

Various media items and recently used as a spokesperson for Covid19 chronic illness, disabled and it being our normal being socially isolated.

Jane is an advocate for equality, diversity, human rights and co-production in education, health, employment, social care, police and transport (airport) accessibility for visible and invisible disabilities/conditions. She is a single parent of two adult children and still carer to her eldest Autistic adult child.

Despite an unusual educational background, even being homeless at one point, she was given the opportunity to study and became the lead autism educationalist for a large charity in the UK and Assistant Head Teacher. She trained younger now known autistic speakers to start speaking but disbelieved by others to be autistic.   She retired early in 2015 due to chronic ill health and disability.  Diagnosed with Ehlers-Danlos Syndromes in 2015 followed by very late autism diagnosis in 2016 after many, many years of disbelief.

She spent nearly 2 years unable to move away from her one room and had to buy a book on hypermobility for her Doctor’s surgery.  She advocates on various Roundtables, charities and organisations as Trustee for CarersSWS, Social Care Institute of Excellence, SCIE co-production steering group and involved in DHSC Covid19 guidances and resources, obviously girls/women autism, education, safeguarding, advocacy and accessible airport groups. She founded and is Chair of Sussex Ehlers-Danlos and Hypermobility Support group (SEDS) in Sussex. Recently published on Versus Arthritis, ColostomyUK, Times Educational Supplement, Ed.psychUK.  Just finished a video for ‘Challenging Stereotypes in autism-women’ for Brighton and Sussex Medical School’ symposium.

Nikki Hughes

 

Nikki is an Autistic blogger and advocate from London (link to Social Media). She was diagnosed recently with EDS and will share her experiences battling for a diagnosis. Nikki is a person of colour, a member of the Romani community and so she will talk about the extra discrimination she faced dealing with medical professionals. We don’t like to talk about it but all sorts of bias and discrimination exist and they impact minorities in ways we can’t even imagine. She is also a mom to 3 children, 2 also on the spectrum with hyper mobility.

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