Table 4.

Time from symptom onset to diagnosis (total 111*)

Time from symptom onset to diagnosis	Number of patients (% of total)
< 2 years	41 (36.9)
2–10 years	36 (32.4)
≥ 10 years	34 (30.6)

Mean number of years from symptom onset to diagnosis was 8.0 years

^*Total number excluded 5 patients with incomplete data and 3 patients diagnosed by family cascade screening before symptom onset