Why patients must be assessed on an individual and on-going basis
Taking a ‘seen one person with hEDS, seen them all’ attitude to hEDS patients is not acceptable. The signs, symptoms and associated disorders which affect an individual with hEDS most profoundly can vary not only between different individuals, but also (during any given period) in each individual themselves.
‘The severity of the wide ranging symptoms, the joints that are affected and the level of pain / fatigue experienced by those with HSD or hEDS, can vary greatly from day to day, or even hour to hour.’ (HMSA 2014a).
Trying to categorise one individual as being more or less severely affected than another, in anything other than the extremes of severity, can also be futile. For example, how can someone affected by debilitating levels of gastrointestinal dysfunction, chronic fatigue, moderate levels of pain, but minor levels of joint instability (see B) be graded as more or less severely affected than someone who suffers with disabling levels of dislocations and soft tissue injuries and high levels of widespread pain and depression (see C)? In each case, the patient’s most severe presenting symptoms are different, but can significantly interfere with their daily activities of living, including schooling or work.
When deciding on an appropriate treatment pathway for patients, such variations must be taken into account. Patients should be assessed on an individual basis and a tailored plan for referrals, treatments and management put in place and regularly reviewed.
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