100 funded projects. 2,700 backers. £700k+ raised and counting!
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:
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:
'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.
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