Receiving the devastating news that you or a loved one have been diagnosed with vascular EDS is a life
changing event and the start of an emotional and uncertain journey ahead. We only know first-hand what it is like to be on the receiving end of this diagnosis.
We are currently working on a project to produce a comprehensive booklet to help support patients and carers with a helping hand and guidance with preparing for the future.
If you would like to be involved with this project and provide suggestions and feedback to help shape this project then please email: firstname.lastname@example.org
So far we have identified the following content will need to be covered in the booklet:
• Support available from Annabelle’s Challenge & EDS UK
• Financial support from Annabelle's Challenge
• Hospital A&E care plan
• Ambulance Service care plan
• Fire & Rescue Service care plan
• Local Council for adaptions etc
• Local School: one on one support, care plan, advice
• Dental care plan
• Medic Support, Education and Awareness
• Appointments Planning
• Medic Alert
• NHS EDS Diagnostic Service
• Genetic Counselling
• General Counselling
• Emergency Information for Medics
• Parental Support
The list is not exhaustive however it is indicative of the level of content that we believe is required for Vascular EDS patients and carers.
Please give us your feedback, it will be greatly appreciated to help "Make Our Invisible, Visible" with Annabelle's Challenge "Our Challenge To Find Your Cure".