In missing the ‘glue’ that binds the body together, Marfan syndrome can pose problems for muscles, physically but also cosmetically. Muscle fatigue is often reported to our helpline, as is ‘hypotonia’, decreased muscle tone. Whilst the physical manifestations of hypotonia are worrying, the aesthetic implications are in their way just as troubling. Several patients have approached us for advice on toning up their ‘toned down’, visibly sagging skin. Dr Child has some tips on how to fight back and support muscle function.

Q: I’ve noticed recently loose sagging skin behind my legs at the top and feel slightly self-conscious about it. Is there anything I can do?

A: Yes, there’s no immediate instant remedy but if you’re prepared for the long haul, there are things that can be done. Lockdown has compounded loss of muscle mass for those who are not exercising as much as usual. As we remain indoors, in a largely sedentary state, it can get worse, especially for Marfan patients for whom weak muscles and poor muscle tone are common symptoms due to lack of fibrillin in the elastic fibres found in muscle and skin. Marfan people have little fat under the skin. Wrinkles will develop in muscular areas and this can be visible when it manifests in sagging skin at the top of and behind the legs and on the upper arms.

I would suggest you see a physiotherapist but, in the meantime, here are some suggestions of our own:

In general, choose aerobic over anaerobic exercises. Aerobic activities are low intensity activities or exercises that can be performed for longer periods of time such as walking, or jog-walking, swimming, or cycling on the flat. These exercises stimulate and strengthen the heart and lungs, thereby improving the body's utilisation of oxygen. This type of exercise is, therefore, often termed cardio exercise. if you can carry on a conversation while you are performing these types of exercises, you have reached an aerobic level.

I would recommend walking and swimming which are good for legs, and lifting light weights which are good for upper arms. Isometric squeezing exercises, and press-ups against the walls are good too.

Horse riding, golf, some forms of dance and even table tennis contribute to keeping fit. It goes without saying that the activity needs to be tailored to your capabilities. Any activity that employs balance, form and movement can be used to reinforce the core stabilising mechanisms while strengthening muscles.

Download our Exercise Guide here.

The Marfan Trust is registered in England and Wales under charity number 328070 at Guy Scadding Building, Dovehouse Street, London SW3 6LY. Contact us at [email protected] or by phone on + 44 (0)20 7594 1605
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