Management

Life Style - Sense & Sensibility

The goals of medical management are to minimise the likelihood of adverse events and to assure that quality of life is minimally impaired.

 

The general approach to medical management includes the creation of an informed care team, the avoidance of activity choices that are likely to cause adverse effects, and the management of ordinary medical conditions where there is additional risk in individuals with vascular EDS such that this risk is minimised.

 

In general, most of the usual aspects of daily living and recreational activities are within the expected possibilities. Collision sports and isometric activities are generally discouraged. There are examples of individuals who have played football, rugby, soccer, and water polo with only bruising occurring during the activity. However, there are rare deaths that can be attributed directly to the involvement in these activities.

 

The increase risk for early death in young males does not seem to be explained by athletic activities in most individuals. The two concerns in high level sports activities are that the trauma of collisions can lead to vascular rupture and that rapid and recurrent increase in blood pressure and rate can compromise normal vascular structure and lead to dissection or rupture. Specific limits on the extent of activity are difficult to establish.

 

The concept that to retain the capacity to converse with a partner during activity, good breath control while lifting, and light weights to retain tone and strength rather than building mass seem like appropriate guidelines. Weight limits depend not only on previous strength and fitness, but also on history of joint hypermobility, pain, and dislocations. Shoulder, hip, and knee injuries can be minimised by use of light resistance and/or weights.

 

Aerobic fitness through mild to moderate conditioning exercises are encouraged, but with use of pools, stationary bicycle, elliptical trainers, or well cushioned treadmills. Running on hard surfaces and for long distances may exacerbate foot, ankle, knee, and hip pain. Activities with rapid acceleration/ deceleration should be discouraged as these may increase the risk of vessel dissection.

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