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:
- meet in groups of up to six people in outdoor spaces such as a park or private garden;
- frequent non-essential shops, drive-in cinemas, and animal attractions including zoos, farms and safari parks;
- exercise in groups of six outdoors, provided that strict social distancing guidelines are followed (alone or with members of your or one other household in Wales);
- sit in the sun in a local park, drive to other destinations, and even play sports (this means people can drive to open spaces irrespective of distance;
- take unlimited “amounts of outdoor exercise” (this is also true for those in Scotland);
- drive unlimited distances to open spots (ideally within 5 Miles in Scotland & Wales);
- form a ‘support bubble’ with one other household if you live alone or are a single parent with dependent children;
- attend a place of worship for the purposes of individual prayer;
- receive face-to-face support at school for years 10 and 12 pupils and students of further education colleges; and
- wear a face covering on public transport.
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.
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:
- restrictive lung disease;
- significant asthma (requiring chronic medications or hospitalization);
- chronic obstructive pulmonary disease (COPD);
- respiratory insufficiency; and
- recurrent pneumothoraxes.
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:
- significant valve regurgitation (causing symptoms or requiring medications);
- heart failure;
- cardiac (ventricular) dysfunction (causing symptoms or requiring frequent monitoring or medications);
- hypertension; and
- among ACTA2 patients, the only group that is at a higher risk are children and young adults with ACTA2 alterations that disrupt arginine 179, referred to as smooth muscle dysfunction syndrome.
Selected patients with vascular connective tissue disorders can have additional associated conditions that could impose higher risk with COVID-19. These include:
- chronic malnutrition;
- Inflammatory bowel disease requiring use of immunosuppressants; and
- other diseases requiring chronic use of steroids or other immunosuppressive drugs.
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:
- leave the house in the early hours set aside for elderly or vulnerable people (usually the first hour of the day);
- shop online if you can for food, if not already using this facility;
- wear a mask while outside;
- remain a minimum of 2 metres (3 steps) away from others; and
- wash hands upon return indoors.