NOTES FOR DOCTORS TREATING PATIENTS WITH APECED/AP
Jaakko Perheentupa, Professor of Paediatrics (emeritus) University of Helsinki, Finland (jaakko.perheentupa@saunalahti.fi) June 2007
Last updated 2008-04-10
General on follow-up and management
The goal is to recognize early the development of new disease components, which may appear throughout life (see Table at the end) and provide adequate treatment thus that the patient’s well-being is maintained. The patient should be aware of the new serious components which may develop and know what new symptoms call for prompt medical attention. Every patient should, in addition to possible local doctor’s follow-up, be seen by appropriate specialists, particularly an endocrinologist at least once yearly, and immediately when new symptoms appear. AF, ovarian atrophy, gastric parietal cell destruction and hepatitis can be predicted on the basis of antibody tests and hormone measurements, but not so diabetes mellitus (DM), hypothyroidism (HT) and HP. A patient who has two or all of HP, AF and DM, is usually complicated to treat and requires follow-up by an endocrinologist, because those diseases and their treatments influence each other. Of these notes, most concern MC, HP and AD, because these have given most problems.
Information to carry. The patient/parents should be provided with written information about the disease and the treatment needs, particularly in situations of emergency.
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