Having a medical care plan in place could make a significant difference to the outcome of any visit to the Accident & Emergency department for patients with 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. VEDS patients are at risk of sudden arterial or organ rupture. This can occur at any age. Mid-size arteries are commonly involved.
Patient concerns should be taken seriously and any reports of pain need full and immediate investigation.
Ask your consultant to provide you with a written medical care plan specific to your vascular EDS and any other known conditions that might affect your care. Your medical care plan letter should be retained in your personal medical file and a copy sent to your local Accident and Emergency.
Keep a copy on you at all times when away from home. Ensure you are wearing a Medic Alert bracelet.
If you have just been diagnosed with vascular EDS you can claim free membership to MedicAlert UK through our charity.