Thank you to all who responded regarding this questionnaire. People with Marfan syndrome (MFS) were asked to participate in a questionnaire distributed by email, post and social media to the Marfan Trust and Marfan Syndrome UK communities in November 2020. The results were analysed and reported by Mohammed Abdelrazek, our summer student.

104 individuals diagnosed with Marfan syndrome participated. Of these, 57% were female. The mean age was 51 years. The mean body mass index (BMI) was low, at 23.5 (normal range 12 – 49). Mean height was 180cm (range 136 – 208cm).

51% of the sample had pre-existing heart and lung conditions deemed to put them at increased risk of complications.

9 reported having COVID-19 confirmed by PCR nasal/throat swab. The median number of days they were ill was 16 (range 4 – 60), with a single case developing pneumonia that required hospital admission.

Even though the majority of the MFS population presented with existing conditions linked to poorer COVID-19 outcomes, only a single case required hospital admission. This may provide evidence that MFS is a protective factor due to reduced adipose tissue (fat). The COVID-19virus uses adipose tissue to replicate and when released, can overwhelm the body evading the immune response. Patients reported increased breathing difficulties. They also presented much more with fatigue and muscle aches, and an increased prevalence of changes in taste, and vomiting. Patients with MFS are less likely to present with a fever.

Reassuringly, Marfan syndrome patients do not appear to be affected severely by COVID-19. The clinical pattern differs significantly from the normal population, with less fever, but more fatigue and muscle aches. Further work with a larger group is required to confirm the possible protective factors of Marfan syndrome, including the lack of obesity which may modify the severity of the disease.

This paper is being submitted for publication. Thank you to all participants.

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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