Often emerging during the formative, sensitive teenage years, chest deformities vary in aesthetic and medical severity. They are not always a cosmetic concern but can sometimes impair heart & lung function. They can also be a first clue to the existence of Marfan syndrome.

Pectus deformities are abnormalities that relate to the shape of a person’s chest wall.  They are a feature of Marfan syndrome and some other connective tissue disorders but can happen unrelated to these conditions. This might be the first clue for a doctor to begin investigating a diagnosis of Marfan syndrome.

The problem often becomes more pronounced during adolescence and periods of rapid growth.

Most pectus deformities are mild and do not interfere with daily activity. However, a small proportion of deformities are severe and can cause both psychological and physiological effects.

Psychological effects can include:

-        issues with self esteem

-        depression

-        withdrawal from activities like dancing, swimming that could ‘expose’ the chest

-        avoidance of social situations like sleep-overs, trips to the beach.

-        this often coincides with puberty and teenage years when formation of strong friendship bonds is so important.

A very small minority of people with a severe pectus deformity can experience physiological effects due to the compression of their heart or lungs. Physiological effects can include:

-        breathlessness on exercise or with minimal exertion

-        difficulties swallowing due to pressure on the oesophagus

-        heart rhythm disturbances or blackouts due to compression of major blood vessels or the pumping chambers of the heart.

Treatment Pathways

We are collaborating with new charity Pectus Matters on Friday 17 May on a webinar in which patient advocates for pectus surgery share their story and surgeon Simon Kendall discusses how to navigate treatment. Book your free tickets here.

Further info

https://www.marfantrust.org/articles/pectus-update

https://www.england.nhs.uk/publication/interim-clinical-commissioning-urgent-policy-statement-pectus-surgery/

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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