Is porphyria progressive or lethal?
Unlike some genetic disorders in which all individuals who inherit a gene mutation become ill,the severity of porphyria varies considerably. Such variability is due to certain “additional factors” other than the gene itself. Consequently, risks of severe medical difficulties or even death in the acute porphyrias are often diminished when affected individuals are well informed of their diagnosis and adopt suggested precautionary measures. Even with modern treatment and prevention, some patients still have repeated attacks. However, progressive deterioration and death from paralysis in the acute porphyrias are very unusual.
