Expect the unexpected and you may save a life, your own or someone else’s. Marfan syndrome carries the risk of a health emergency and pre-empting this with some practical preparation will alleviate a stressful situation and enhance the chance of survival.

Unfortunately, Marfan syndrome carries risks of serious health emergencies, the most life threatening being aortic dissection (a tear in the aorta, the main blood vessel in the body). Being prepared for such a situation can be beneficial and help your family and the emergency services get you or your loved one the help they need as soon as possible.  

These are some things you can do to ensure that in a frightening, stressful situation you can provide vital information to healthcare professionals. Aortic dissection needs to be diagnosed and treated as soon as possible to maximise a person’s chance of survival. Every minute counts.   

·       Make sure your family know about this potential risk and what to look out for 

·       If you are a parent, make sure your child’s school know about the signs and symptoms of aortic dissection (this is very rare in children) 

·       Mention Marfan syndrome and the increased risk of aortic dissection to the 999-call handler 

·       Consider wearing a Medical Alert bracelet or necklace (you can even get a slide that can be added to an Apple Watch strap now) 

·       Carry our Marfan Trust Alert card for Aortic Dissection (available in our shop) here is the link

·       Complete the medical information option on your smartphone, this can be accessed by emergency services. Include the following: 

o  List of medications 

o  Allergies 

o  Medical conditions 

o  Any surgery you have had (with dates) - including details of the hospital and the surgeon (It may be a specialist centre that needs to be contacted for advice) 

It can be scary to think about a health emergency, but some time spent making plans ‘just in case’ can make you feel more in control and hopefully improve timely access to lifesaving care if it is ever needed.  

Marfan Trust, a CIO registered as a charity in England in Wales with charity number 1198847 at: c/o 24 Oakfield Lane, Keston, Kent, BR2 6BY. Contact us at [email protected] or by phone on + 44 (0)333 011 5256
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