A country is brutally invaded, and a carefully constructed regime of care is disrupted. When Russia stormed Ukraine, tragedy ensued, saturating the news with hellish images of destroyed buildings, fleeing refugees and stranded hospital patients. Stories of altruistic heroism emerged as people drove across continents and dangerous terrain to rescue cancer patients and ferry them to safe ports of call. But what of stranded Marfan patients? We were recently approached by a young Marfan man for help in navigating our bureaucracy in order that he may reach sanctuary and resume continuity of care.

By Dr Anne Child & Victoria Hilton

Q: My name is P. I'm a 24-year-old man with Marfan syndrome. I’m from Ukraine. Now there is a war in my country. My application has been submitted but I have been patiently awaiting a visa under the Homes for Ukraine scheme for almost two weeks. I have no access to my doctor or healthcare. I have called the visa helpline, but they told me I would need to be sick before they would do anything to assist me. I am struggling to see how I am not an urgent case now. I have some problems with aortic and need some medical supervision also my drugs running out too. Maybe they have been considering my application for so long because I am a man... 

Could I ask you to help me speed up my visa? Just call to visa centre. I can send for you all my documents, reference number of my visa application, etc.

I am an ordinary person, I can do everything like other people, I can drive a car, I can provide for myself, I have my favourite job. When the war is over, I plan to return home. But now I need  some help. I can wait, but how long can I wait...?

Thanks for understanding.

A: Hello, thank you so much for contacting us. We have been following with mounting horror the events in your country and wish to emphasise that we are here to help you. We have your mobile and can offer you our personal number in return. You also have our helpline number. Please feel free to contact us by text or phone at any time if you have a question. We want to make sure you reach the UK as soon as possible so that we can continue your treatment without distruption or interruption.

We can offer you:

1) a letter of support and advocacy to reinforce and expedite your visa application;

2) reassurance that that wherever you find yourself in the UK there may well be a Marfan clinic nearby since there are 22 in this country and you can be referred for annual echocardiograms on arrival;

3) a network of 3000 families -  and can find a family near you ready to offer peer support and helpful advice;

4) literature for you and your new GP;

5) our website www.marfantrust.org which is a trove of useful information;

6) an offer of a home for you already so please let us know if you need one.

We would like to know:

1)Your current medication;

2) The size of your aorta.

Once we hear from you we will form an action plan. 

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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