Pledge- Hypermobility Ehlers-Danlos Book

Impact data and claims within this report are provided by the project creator and have not been independently verified by Spacehive.

Pledge- Hypermobility Ehlers-Danlos Book

Pledge- Hypermobility Ehlers-Danlos Book

SEDS By SEDS

People with EDS HSD have no medical care pathway. Often mis/undiagnosed. We miss education, lose employment, friends and health. This costs taxpayer. Our project can help alleviate this.

Crawley Idea stage

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We aim to buy the Hypermobility EDS book and distribute it to GP surgeries, hospitals, schools, Secondary and Primary, Playgroups in Crawley so staff and volunteers know how to access information. At the same time supply these books to libraries so people living with EDS and HSD or their family/carers/friends can access them. There are co-occurring conditions too and often children miss education, patients end up in A&E and end up costing the tax payer more money. People living with EDS/HSD can lose their employment, colleagues, friends and activities/hobbies. Patients are themselves are unaware of all the symptoms and disbelieved. Medical Practitioners are unaware of it but even after diagnosis EDS/HSD sufferers are discharged back from the consultant to the GP. We have trialled this and once they find out there is a group and a book it is a great help to know they are not alone both medical practitioner or school and the person living with EDS/HSD plus families/carers.

What we'll deliver:

  • To buy books and distribute to libraries
  • To buy books and distribute to schools
  • To buy books and distribute to medical practitioners
  • To feedback from people living with EDS HSD to crowdfunders
  • To run an open to public event/forum for EDS/HSD awareness with information stand and speakers

Why it's a great idea:

We are mis/under diagnosed and disbelieved. Even if we do get a diagnosis which can take many decades of suffering, we have to be immediately discharged back to the GP who has no training or generally no knowledge. Teachers are confused to to teach EDS/HSD pupils when they present with so many symptoms. Parents/carers are confused/worried. We're often told it is all in our heads and this can lead to issues with physical health, mental health . We need support and so do those who care for us. Our symptoms are not normal hence the zebra. We are all unique in the way we present with our symptoms. Our Doctors, teachers, physios, carers and friends also need support and this book is the basis for understanding our symptoms. We often end up in A&E and costing the tax payer money. People with EDS/HSD can lose employment, friends and activities/hobbies.This book is written by a GP with EDS, is peer supported and well regarded. Just £2 will go towards a book. 14 pledges = 1book!

Steps to get it done:

  • Buying books in bulk after identifying the necessary places in Crawley and presenting the books
  • Showcasing this project in social media and print media as a way forward for other communities and areas
  • Evaluate feedback from this project before and after
  • Arranging open space event/forum for awareness and information at Libraries

'No other disease in the modern history of medicine has been so neglected as Ehlers-Danlos syndromes' Professor Grahame. It affects all the categories as being able to work boosts the economy, increases employment, education and volunteering in other areas. It definitely affects all activities and leisure pursuits as children miss out of activities, adults also are isolated and immobile. Knowing more about our condition and what is possible plus how to keep active safely will aid all of us and help us to use leisure centres. Possible affects the environments as we costing more and using more.

Gallery

Location Crawley

About the space

Crawley and surrounding areas

Council

Crawley Borough Council

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How will the money be spent?Total £4,916

160 - £4,414 (90%)
23.99 - £28 (1%)
Other - £474 (10%)

Costs Breakdown

This shows how money raised for the project will be spent. Before entering fundraising these costs will be confirmed by the project's Delivery Manager and verified by the verifier.

90%
160
£4,414
1%
23.99
£28
10%
Other
£474
  • Spacehive fees
    £222
  • Transaction Fees
    £207
  • VAT
    £44

Overfunding

This project is enabled for overfunding. If the project hits its funding goal before the end of the campaign period, any extra funds raised will be spent (in order of priority) on: More books to supply to members of SEDs with EDS and Hypermobility. Widen out initial plan across West Sussex. We hire more community rooms, empty shop fronts to use them as an information centre and awareness stand/talk.

Total £4,916

Our Wish List

We're currently looking for people to offer skills and stuff to develop our project! Check out the list of what we need below and then use the 'Offer Something' button to the right to get involved.

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