Self-management

Rare diseases

Adrenal disorders are rare diseases, although primary hyperaldosteronism is relatively more common. In general, most patients and caregivers have never heard of these conditions when they are diagnosed.
Most general practitioners and other healthcare providers will not have a single patient with an adrenal disease in their practice during their careers.  As a result, most healthcare providers have little knowledge about adrenal diseases and little experience in the treatment of these patients.

Diagnostic delay

The complaints and symptoms can be non-specific, especially in the beginning of the disease, and can be appropriate for a large number of other conditions. This makes it difficult to make a diagnosis. These two factors can lead to a diagnostic delay. This means that a considerable time can pass between the appearance of symptoms and the moment of diagnosis. And while searching for answers, with the aid of the care provider, the patient can suffer from a wide range of ailments.

Self-management

As soon as a diagnosis is made, the patient can once again take more control of his own life. With the right medication, intervention and guidance, a reasonable to good quality of life is possible. It is certain that a patient who is capable of self-management will experience a better quality of life.

The term co-management is also used. By self-management or co-management is meant: “dealing with the chronic condition (symptoms, treatment, physical, psychological and social consequences and associated lifestyle changes) in such a way that the condition fits in optimally with life.” And if you do this together with a partner or other family member, the term co-management is used.

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