Marfan Trust Statement on COVID-19

As Coronavirus, COVID-19, continues its relentless march across the world and the UK, the Marfan Trust would like to provide some guidance to our community.  With the disparities and individual variabilities among those with the Syndrome, not everyone with Marfan sydrome is at equal risk. We therefore outline below those with a heightened susceptibility to the virus and the precautions they should take. In the meantime we remain vigilant to the new dangers posed by this evolving health crisis so please keep a watchful eye on our website.

Who is at Higher Risk
People with genetic aortic conditions who also have significant lung disease should consider themselves at high risk and employ the highest protective strategies to try to prevent infection.

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

- Restrictive lung disease
- Emphysema
- Significant asthma (requiring chronic medications or hospitalization)
- Chronic obstructive pulmonary disease (COPD)
- Respiratory insufficiency
- Recurrent pneumothoraces

People with genetic aortic conditions are also at higher risk for 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

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

- Chronic malnutrition
- Inflammatory bowel disease requiring use of immunosuppressants
- Other diseases requiring chronic use of steroids or other immunosuppressive drugs

People with genetic aortic conditions with none of the above whose only cardiovascular feature is an isolated aortic root dilation or aneurysm are not considered at higher risk than the general population.

You should discuss any other chronic conditions with your primary care doctor to determine if they might increase the risks associated with COVID-19.

Protective Strategies
People with genetic aortic conditions at higher risk, as explained above, are advised to get flu (influenza) and pneumonia (pneumococcal polysaccharide vaccine, PPSV, also known as Pneumovax 23, PPV-23) vaccines and to follow all the protective strategies outlined in the newly released CDC guidelines for patients with chronic illness.

The Professional Advisory Board suggests that people with genetic aortic conditions report symptoms to their primary care provider as soon as they experience them to assure prompt testing and immediate treatment.

Treatment for Flu, COVID-19, and other Potentially Severe Infectious Respiratory Illnesses

 - Seek medical attention to get appropriate testing. 

 - If your physician thinks that your respiratory symptoms could be helped by antibiotics, do not take fluoroquinolones, a commonly prescribed class of antibiotics, if there are suitable alternatives or unless advised by an infectious disease specialist. These drugs should not be used in people with certain genetic conditions that are associated with aortic aneurysms and dissections such as Marfan syndrome and other genetic aortic conditions. The antibiotics in this class are:  Avelox, Cipro, Factive, Levaquin, and Ofloxacin.

- Choose a cold medication designed for people who have high blood pressure. Some cold medications do not contain decongestants. However, these medications may contain other powerful drugs, such as dextromethorphan, that can be dangerous if you take too much. Follow the dosing instructions carefully. 

- Avoid over-the-counter decongestants and multi-symptom cold remedies that contain decongestants — such as pseudoephedrine, ephedrine, phenylephrine, naphazoline and oxymetazoline.

 - Take a pain reliever such as acetaminophen to relieve a fever, sore throat, headache, or body aches.

 - To relieve nasal congestion, try saline nasal spray. The spray can help flush your sinuses.

 - Soothe your throat. To relieve a sore or scratchy throat, gargle with warm salt water or drink warm water with lemon juice and honey.

 - Drink plenty of fluids. Water, juice, tea, and soup can help clear your lungs of phlegm and mucus.

 - Increase the humidity in your home. Use a cool-mist humidifier or vaporizer to moisten the air, which may ease congestion and coughing.

 - Get plenty of rest. If you are not feeling well, take it easy.

For more information
Please visit the USA based Marfan Foundation (our US counterpart) and in particular watch its webinar here and also register for the Foundation’s future webinars on this topic. 

COVID 19 and Genetic Aortic Conditions
There is currently limited data on underlying conditions that may cause a worse outcome with this virus. It is thought that people with underlying conditions like cancer, diabetes, cardiovascular disease, chronic respiratory illness, and other conditions may be prone to more serious complications.

Government and NHS Advice
We echo the government’s advice on prevention and containment here, together with guidance from the NHS.

We remain vigilant for the risks posed by COVID-19 and will provide relevant updates on our website, www.marfantrust.org.

 

Marfan Trust Statement on COVID-19
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