Our SOS casebook continues apace as we respond quickly to extricate the stranded Marfan Ukrainian, ā€˜Pā€™, from a labyrinth of bureaucracy. His drug supply rapidly depleting, and his aorta dangerously dilating, it is imperative he reaches safety and sanctuary soon. Thankfully, it seems our letter of support has contributed to a successful result!

By Dr Anne Child & Victoria Hilton

Q: Hello, I am here in United Kingdom. I am in the northern part of the UK and I am registering with a doctor. Is there anything else I should do?

A: Welcome to the United Kingdom, and we are all very pleased you arrived safely. I understand you registering with a general practitioner (doctor). It is most important that you have a medicine prescribed to keep your aorta strong.

We recommend Irbesartan 150 mg daily, with your blood pressure measured carefully to make sure it doesn't fall too low.

Then please ask your doctor to refer you urgently to your nearest Cardiology clinic for an echocardiogram and ECG.

May I ask where you are living? There are Marfan clinics in most big hospitals in England.
Also, if it would help you to have pamphlets to show your doctor about Marfan syndrome, I can post these to you. Many doctors do not know about this condition because it is rare.

Also if you would like to talk with another family who have Marfan syndrome, we can probably find one of our members who lives near you.

Please let us know how to help you.

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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