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In other cases, there are periods of relative stability with episodes of acute worsening (acute exacerbations or other complications), which are a cause of high morbidity and mortality.2 In a minority of the patients, the disease is of short duration with more rapid progression (accelerated form).7 In general, the average survival is 25 years from symptom onset.2 It is unknown whether the different forms of natural history represent different disease phenotypes