We would like to host a retreat weekend in Blackpool for families affected by vascular EDS. During the weekend we will be providing a support group for patients and families to attend and time for them to share their experiences living with vEDS.
Categories
Beneficiaries
Situation
Vascular Ehlers-Danlos syndrome (vascular EDS) is a life-threatening connective tissue disorder that affects all tissues, arteries and internal organs making them extremely fragile, it is estimated to affect 740 people in the UK. The impact of vascular EDS causes many of our members to suffer with daily anxieties, mental health, isolation, limited social life and fear of the unknown. Providing peer support is key in enabling us to bring people together who are affected by vascular EDS.
Solution
A retreat weekend will enable individuals to share their experiences of vascular EDS and how they manage it on a day-to-day basis. Some deal with this life threatening diagnosis quite positively which will help others to feel less anxious. Many people with vascular EDS have not met anyone else affected by the condition. Seeing others thrive with this frightening condition, often described as a ‘ticking time bomb’, can be very reassuring and comforting in the sense that they feel ‘less alone’.
