Exercise, sport and everyday activity with Marfan syndrome

Marfan syndrome weakens connective tissue in the aorta, the lens-holding fibres of the eye, the ligaments around the joints and the spine. Physical activity tests all of these. The Marfan Foundation lists four concerns that doctors weigh: stress on the aorta from a higher heart rate and blood pressure, eye damage from head impact, bone and joint stress leading to pain or dislocation, and internal bleeding in people taking blood-thinning medicines.

None of this means avoiding movement altogether. The NHS encourages regular moderate exercise and a balanced diet, and moderate exercise is also part of how joint pain is managed. Staying active helps mood, sleep, bone health and muscle support around loose joints.

The Marfan Foundation advises most people to choose low-intensity, low-impact activities and adapt them to their own needs. In practice that often means steady, conversational-pace exercise rather than all-out effort.

• Walking at a comfortable pace, including gentle hill walking.

• Swimming or water-based exercise, which supports joints and avoids impact.

• Cycling on flat routes at a relaxed effort, with a helmet.

• Gentle stretching, mobility and balance work guided by a physiotherapist.

• Light resistance work using low loads and many easy repetitions rather than heavy lifts.

The NHS gives long-distance running, heavy weightlifting, gymnastics, climbing and scuba diving as examples of activities to avoid because of strain on the heart and joints. The Marfan Foundation adds that doctors caution against competitive and contact sports.

The Marfan Foundation stresses that no recommendation holds true in all circumstances, and that each person should discuss physical activity with their doctor. Your safe level depends on the aortic measurement, whether you have had surgery, how your valves are working, your eye health and your joints.

Ask your cardiologist for concrete limits, for example how hard you can push, whether you should avoid holding your breath while straining, and how to use a heart-rate guide if one is suggested. A physiotherapist with experience of joint hypermobility can tailor an exercise programme, and the NHS notes that physiotherapy uses exercise, massage and manipulation to improve mobility and muscle support.

Beta blockers slow the heart rate and can make hard exertion feel more tiring, which is part of why moderate effort is recommended. For joint pain, the NHS suggests moderate exercise together with paracetamol or anti-inflammatory painkillers, and your GP can advise on which is suitable alongside your other medicines.

The Foundation also draws attention to a warning against fluoroquinolone antibiotics for people with Marfan syndrome and related aortic conditions. Whenever a new medicine is offered for any reason, mention your diagnosis. Everyday tasks such as carrying shopping, pushing a pram or moving furniture also count as exertion, so pacing and sharing heavy tasks is sensible.

Stop exercising and seek help if you develop sudden chest, back or abdominal pain, unusual breathlessness, palpitations that do not settle, fainting or near-fainting. Sudden severe or tearing pain, or collapse, needs a 999 call, and you should tell the crew you have Marfan syndrome.

A new shadow across vision, flashing lights or a sudden drop in sight, particularly after a knock to the head, needs urgent same-day eye assessment through A&E or an emergency eye service. Persistent joint swelling, a joint that will not return to position, or new leg numbness and severe headache should be reviewed promptly by your GP or specialist team.