Latest Statement on Covid-19 from The Marfan Trust

In this, our latest statement on COVID-19 and its ramifications for our Marfan family, we interpret the most recent lockdown rules and government advice with a view to attendant risks. We are slowly edging our way back into the world as queues form outside newly opened shops, and certain sports are resumed. While streets become busier, many Marfan people feel correspondingly more vulnerable. We hope therefore that our top tips below will keep you safe and sound as we journey our way back to normality.

Notwithstanding the disparities between the four nations of the United Kingdom, we are now generally allowed to:

We must:

Our Marfan community comprises a full demographic mix of occupations, ages, genders and ethnicities, and this diversity is reflected in calls to our Helpline. From teachers facing a return to sparsely filled schools and grocery-pickers who have worked seamlessly during lockdown, to those emerging from complete isolation to take their first steps outside, no one situation is the same. And, given the inherent disparities and variabilities within Marfan syndrome, not everyone is at equal risk. 

High Risk
Those with genetic aortic conditions and lung disease are considered more susceptible to the effects of COVID-19 and should take protective measures:

This group includes individuals with any of the following lung diagnoses:

Based on advice from the Marfan Foundation (USA) it is advisable for people with genetic aortic conditions to receive the flu (influenza) and pneumonia (pneumococcal polysaccharide vaccine, PPSV, also known as known as Pneumovax 23, PPV-23) vaccines and to follow all the protective measures (see below Protective Measures for People at High Risk).

People with genetic aortic conditions are also at higher risk with COVID-19 if they have any of the following cardiovascular diagnoses:

Selected patients with vascular connective tissue disorders can have additional associated conditions that could impose higher risk with COVID-19. These include:

We suspect that any person with VEDS who has experienced coughing up blood due to lung haemorrhage is at higher risk of pulmonary complications if infected with COVID-19. Additionally, even in the absence of lung haemorrhage, infection by COVID-19 is known to cause shortness of breath, significant cough, and difficulty breathing, although in some cases, the infected patient is asymptomatic. We do not have COVID-19 specific data specific to VEDS patients.

Protective Measures for People at High Risk
Below constitutes our advice for those at high risk. Assuming you are contemplating your first steps outside since lockdown was imposed, you should:






Latest Statement on Covid-19 from The Marfan Trust
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