Description

A patient with porphyria can have a poor quality of life (QOL) depending on the severity of the disease.


Factors that may affect the patient's quality of life:

(1) anxiety and depression

(2) posttraumatic stress disorder (PTSD) related to acute attacks

(3) other neuropsychiatric issues

(4) failure to secure or loss of employment

(5) disfigurement in sun-exposed skin, especially the face

(6) pain or discomfort (abdominal, other)

(7) disability (impaired mobility, problems with self-care)

(8) delay in diagnosis

(9) impact of comorbid conditions (liver disease, etc)

(10) social and family problems

(11) need to avoid factors that may precipitate an acute attack


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