VEDS Support Programme

Annabelle’s Challenge has been awarded £177,415 in National Lottery funding to support its work with individuals living with vascular Ehlers-Danlos Syndrome (vascular EDS). We will use the funds to deliver the VEDS Support Programme across England.

Our VEDS Support Programme is available to all our members touched by vascular EDS and offers advocacy, emotional and practical support. From the moment you join Annabelle's Challenge you will have access to all our resources and advice:

VEDS management guidance.
Emergency preparedness.
Counselling Service.
Talks and support in educational settings.
Peer support 'buddy up' with other vascular EDS members.
Vascular EDS Retreat Weekends, Conferences & Events.
Patient Coordinator support.
Freephone helpline.
Online support and 1-2-1 calls.
Free Sunflower lanyard and EDS awareness card.
Help with creating a care team.
Access to research study projects & clinical trials.
Access to private Facebook support groups.
Ambulance Medical Marker requests.
Mental Health First Aid support.
Exclusive Careline365 discount on SOS GPS alarms.
Free MedicAlert UK subscription plus exclusive discounts on bracelets.
Regional Support Groups.

Parents of a child diagnosed with vascular EDS

Your child may have been diagnosed because one of his/her parents has vascular EDS, or it may be that there is no family history and your child is the first person in the family to be diagnosed. In all cases it is understandable that parents will worry about their child and want to protect them from harm. However it is also important that your child has opportunities to lead a full and rewarding life and to experience the joys of childhood.

It is not possible to eliminate the risks of vascular EDS, but sensible measures can be adopted to avoid high risk situations. Alternative activities should be provided where participation in a particular activity is thought to be best avoided.

Many children with vascular EDS do not present with any medical problems and most people with vascular EDS are diagnosed as adults. However, once the diagnosis is known it can be used to guide medical care in an emergency situation. It is therefore important that the information is given to schools, childminders, activity group leaders and others that are looking after your child.

If you are a parent of a child with vascular EDS you can request to join our private Facebook group 'Vascular Ehlers Danlos Syndrome UK' and talk to other parents in the same situation. Many parents contact the charity and mention in clinic "when is the right time to talk to my child about vascular EDS" we can support you with this and so can your genetic counsellor.

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Home Visits

We provide support and advice through our freephone helpline and virtual appointments, however on a more practical level we can visit you in your own home or preferred location to talk through the management of this condition and how to prepare for the future.

School Support

It is likely your child's school will not understand the severity of a diagnosis of vascular EDS and the care and safe management involved. We can help you and your child’s school to put in place an Individual Healthcare Plan.

Our team will also visit the school to talk to the teachers, staff and SENCo about vEDS and the plans that will need to be put in place to help keep your child safe.

Peer Support

Feelings of isolation often accompany the everyday effects of living with vascular EDS. Frequently, those feelings stem from the perception that no one understands what you are going through. Sometimes you simply need to talk freely about how you're feeling.

Speak with someone who understands. Our peer support community is comprised of patients, family members and carers of all ages affected by vEDS. They are ready to listen to your cares and concerns; offer emotional support; and will share their experiences and offer their understanding.

How do I get involved? It's easy... just contact Annabelle’s Challenge on 0800 917 8495 or email info@annabelleschallenge.org.

One of the Annabelle’s Challenge team will contact you and get to know you and your needs, and plan for a peer support volunteer to contact you by telephone, text message or e-mail, however you prefer.

Remember - you are not alone. Annabelle’s Challenge is here to help.

Meet Danika

Danika - Patient Coordinator

Danika joined Annabelle's Challenge in April 2022 taking on the role of patient coordinator.

"Before joining the charity I was a childcare professional with 13 years’ experience of working with children and their families.

Recently I completed my studies of Mental Health at college and gained a qualification in Mental Health Awareness Level 1 and Level 2 in Social Care and Children’s And Young Peoples Mental Health."

Alongside her role as a patient coordinator, Danika is also a Mental Health First Aider accredited by MHFA England.

Meet Scarlett

Scarlett - Patient Coordinator

Scarlett joined Annabelle's Challenge in October 2023 taking on the role of patient coordinator.

"I am so pleased to be given this amazing opportunity to take on the role as a patient coordinator for the charity to help support all our members both existing and newly diagnosed. I have previous experience in childcare, and I love to travel especially to Ireland".

Alongside her role as a patient coordinator, Scarlett is also a Mental Health First Aider accredited by MHFA England.