Emergency Preparedness
In an emergency DO NOT CALL 111
YOU MUST CALL 999
Create your VEDS Emergency Toolkit!
If you’re living with vascular EDS, it’s important to understand the possible complications that can happen because of your condition. This especially includes how to prepare you and/or a loved one for emergencies.
Emergencies can be scary for someone with vascular EDS. Will first responders know anything about your specific symptoms or diagnosis? How will emergency personnel know how to access information about vascular EDS?
Once you’re diagnosed with vascular EDS, you’ll want to ensure you’re treated correctly in a medical emergency or routine appointment using the tools and resources that are available.
What resources will help me prepare for an emergency? If you haven’t done so already, now is the time to create or update your 'VEDS Emergency Toolkit'.
Example of available resources recommended for your VEDS Emergency Toolkit:
- Request an Ambulance Marker.
- Register your mobile with 999 / 112.
- Update your Summary Care Record (SCR).
- Additional Information on your GP record.
- Emergency information QR code.
- Emergency Information for Medical Professionals.
- NHS blue wallet card.
- Download the what3words App.
- Add Medical ID on your smartphone.
- Medic Alert bracelet.
- Careline365 SOS GPS Alarm.
- VEDS Emergency Pack.
VEDS Emergency Pack
The VEDS Emergency Pack has been designed to give you the resource and support to help you advocate for yourself in the event of a medical emergency or routine appointment.
The contents of this pack have been developed from the lived experience of people who have vascular EDS when accessing emergency care, it is available free to patients of Annabelle's Challenge / EDS Service and includes:
- Personalised details, next of kin, NHS number & QR code.
- Emergency Information for Medical Professionals.
- Emergency signs and symptoms.
- GP medical summary letter template.
- Care Team template.
- Patient Self-Advocacy advice.
- Emergency Preparedness.
- Counselling Service.
- Hospital inpatient alert document.
- Access to emergency information available in 12 languages.
“I was taken seriously for what felt like the first time. Staff who weren’t directly involved in my care came over to read the information in the Emergency Pack too! I can’t stress enough how important it is!”
“Received our Emergency Pack this morning and thank god they came, we have just got back from A&E. All is well but the red pack made a massive difference in their decision making and speed with getting seen”
“I had to have surgery, and every single healthcare professional enquired about the Emergency Pack and took their time to read the information. It worked so so well. I’m so impressed that everyone took it so seriously.”
“I was admitted to hospital with chest pain, thankfully nothing serious, I went armed with my Emergency Pack and the Doctor said he thought the pack was fantastic, informative and showed that as a patient I knew about my condition! I was confident for the first time in six years that they were taking the condition seriously.”
Resource Request
Additional resources are available to UK vEDS patients and are provided by Annabelle's Challenge / EDS Service / partner approved organisations.
If you are not a member of Annabelle's Challenge and would like to access all the available resources join here today, membership is free for life.
If you are an existing vEDS member of the charity and a patient of the EDS Service and require a replacement blue wallet card and/or additional resources for emergency preparedness, please complete the resource request form:
VEDS Resource Request
EMERGENCY INFORMATION
In an emergency DO NOT CALL 111
YOU MUST CALL 999
Signs and symptoms that require medical attention:
- Severe or continuous pain in the head, neck or abdomen which may be diffuse or localised.
- Sudden onset of bleeding.
- Unexplained swelling of a limb.
- Symptoms of a stroke (drooping of the face, arm weakness, slurred or unclear speech).
- Weakness of the limbs.
- Dizziness or loss of consciousness.
- Shortness of breath and/or difficulty breathing or speaking.
- Visual disturbance.
- Redness, pain and prominence of one or both eyes.
- The sound of pulsations in the head.
- A large bruise increasing in size.
In the event of any of the above signs and symptoms:
- CALL 999 for an ambulance / attend the Emergency Department.
- Inform the emergency services and any medical professionals of the diagnosis of Vascular Ehlers Danlos Syndrome.
- Take your VEDS Emergency Pack.
- Emergency Information for Medical Professionals must be shown to every medical professional you encounter.
- Explain the increased risk of arterial or organ rupture.
- Be aware presentation of complications in vascular EDS can be subtle and unusual.
Self-Advocacy
A unique collaborative model providing supportive and self-advocacy tools to the rare disease community.
Juliette M. Harris, Jacqui Fish, Jared Griffin, Gemma Hasnaoui, Clare Stacey, Neeti Ghali, Fleur S. van Dijk.
This is a great example of collaborative work of the EDS Service, a highly specialised service commissioned by NHS England and Annabelle's Challenge including health care professionals, patients, carers and members of the emergency care project team.
The recommendations from this unique collaborative model include eight specific domains of self-advocacy: increasing knowledge of rare disease, taking care of mental well-being, taking care of physical well-being including routine care, the development of good working relationships between patients and health care professionals, information accessibility, emergency preparedness, taking part in education and outreach, and involvement in research and feedback opportunities.
Highlights
- Having a rare disease presents a unique set of health care challenges.
- Self-advocacy can help people with a rare disease get their needs met.
- Empowering health care professionals in rare disease is important.
- Specialised services are uniquely placed to help people with rare diseases.
- Collaborations between patients and health care professionals support self-advocacy.
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 syndrome (EDS) when in fact they probably know absolutely nothing about the vascular type EDS.
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 vascular EDS 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.
Tranexamic Acid (TXA)
Tranexamic Acid (sometimes shortened to TXA) is a prescription medicine that controls bleeding. It helps your blood to clot and is also used for nosebleeds and heavy periods.
If you're having a tooth taken out, using tranexamic acid mouthwash can help stop bleeding.
If you have any condition that causes you to bleed more than usual, you may need to take tranexamic acid for a few days before having surgery or dental surgery.
Tranexamic acid is available on prescription as:
- tablets
- liquid – for children and people who cannot swallow tablets
- mouthwash
- injections – usually only given in hospital
For further information about TXA: https://www.nhs.uk/medicines/tranexamic-acid/
Fluoroquinolones Warning
There is concern that a group of antibiotics known as fluoroquinolones or quinolones may have a role in causing or worsening aortic aneurysms.
In the UK, the drugs used in this group include: ciprofloxacin, levofloxacin, moxifloxacin, norfloxacin, ofloxacin and nalidixic acid. Other countries may use different drugs in this group.
Whilst not conclusive, there is enough circumstantial evidence for international medicines regulators and manufacturers to advise avoiding these drugs in patients at risk of aortic aneurysm. Patients with vascular Ehlers-Danlos Syndrome (vEDS) are in this group, although there are currently no reported cases of aortic aneurysm caused by these drugs in vEDS. However, it follows that they should be avoided in patients with vEDS.
This advice only applies to fluoroquinolones /quinolones. It does not apply to any other form of antibiotic, which should be used as prescribed. In cases of very serious infections, where these drugs can potentially be life-saving, the balance of risk and benefit may still be in favour of their short-term use. This would be a decision for the patient and their medical team.
Register with 999
Have you registered your mobile with 999?
In an emergency, if you have no phone signal you can use emergency SMS to contact the emergency services.
What is emergency SMS? If you cannot make voice calls, you can now contact the 999 or 112 emergency services by SMS text.
Don't leave it until you need it, that's too late. Do it now so you're ready, just in case.
Text 'register' to 999
what3words App
Every 3 metre square of the world has been given a unique combination of three words. Used for e-commerce and delivery, navigation, emergencies and more.
Get help faster in an emergency
When it’s hard to describe where you are in an emergency, you only need to read out three words for 999 to know exactly where to find the incident.
To find you more easily in an emergency, many UK Emergency Services are encouraging you to share your 3 word address.
How do I use what3words in an emergency?
- Find the 3 word address for your current location on the free what3words app for iOS and Android. It works offline – ideal for areas with unreliable data connection.
- Share your 3 word address over the phone to the call handler.
- The emergency service can then coordinate a response directly to the exact location where help is needed.
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Ambulance Marker
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Last Updated: November 2024
Note: 999 / 111 UK INFORMATION ONLY- Please refer to the emergency phone number relevant to your country. Annabelle's Challenge cannot be held liable in the event of an emergency and the appropriate procedures not being followed and/or the response from the attending ambulance crew and/or the hospital staff.
