Care and emergency advice from Annabelle’s Challenge

Please note: The following text cannot and should not replace advice from the patient's healthcare professional(s). Any person who experiences symptoms or feels that something may be wrong should seek individual, professional help for evaluation and/or treatment. This information is for guidance only and is not intended to provide individual medical advice.

The following information was provided by Annabelle’s Challenge in the 2022 Winter Edition of Fragile Links.

Emergency Procedures

We advise people with vascular EDS to prepare an emergency preparedness kit as a ‘grab and go pack’ and have the following resources to hand and show them to the ambulance crew and hospital staff in the Emergency Department:

• Emergency information for medical professionals.
• Emergency information Blue Wallet Card
• Medic Alert
• To Whom It May Concern (TWIMC) GP letter
• Sunflower lanyard
• Care team list
• Ambulance Marker
• what3words App

The resources available to UK vEDS patients are provided by Annabelle’s Challenge/EDS National Diagnostic Service. If you are not a vEDS member and would like to access all the available resources join Annabelle’s Challenge today.

Patient Self-Advocacy

It’s a must for anyone who’s managing a serious or rare disease such as vascular EDS and for those who are caregivers. You’ll feel more prepared to self-advocate if you start learning all you can about vascular EDS, especially about how to get access to the medical care you need, and any scans that maybe required such as a CT or MRI.

It is not uncommon for someone with vascular EDS to attend their local Emergency Department only to find that the medical staff have never heard of the condition. They might suggest they know about Ehlers-Danlos syndromes (EDS) when in fact they probably know absolutely nothing about the vascular type.

You and/or your caregiver will need to become patient advocates. Advocacy is important because it may reduce the chances of errors, incorrect discharge and harm to a vEDS patient. Primarily, nurses may need to speak on behalf of you and/or your caregiver and collaborate with the healthcare team.
Being a self-advocate means learning how to be direct about what you think you may need in terms of your treatment plan. It also means listening and learning from your health care providers, all of whom are experts in their fields. From these discussions, you and your medical team can develop a plan that works for you. Being a self-advocate also means asking for help when you need it.

Be confident, voice your opinion, be firm and be positive.

Ambulance Medical Marker

We strongly recommend that people with vascular EDS have an ambulance medical marker set up at their address. In the event of an emergency, the presence of this marker will alert an ambulance crew that there is a person at that address with a diagnosis of vascular EDS. This can result in a more specific urgent treatment approach.

An ambulance marker can be placed on a home address of a person with vascular EDS (and other addresses such as work/school/university). For advice on how to get an ambulance marker set up, please complete the online form and we will contact you to talk you through the process. www.annabelleschallenge.org/ambulance-marker