The experience of living with Niemann–Pick type C: a patient and caregiver perspective

Table 1 Overview of NPC patients

Patient	Age	Gender	Age at symptom onset	Age of diagnosis	Focus group responder
1	29	M	–	14	P + C
2	19	M	3	10	P + C
3	24	M	–	22	P + C
4*	30	F	Mid-to-late 20’s	27	P + C
5	63	F	47	59	P + C
6*	33	M	–	30	P + C
7	43	F	–	39	P
8	47	M	–	46	P
9*^#	35	M	20–21	30	C
10*^#	32	M	23–24	28	C
11^a*	33	F	7–8	29	C
12	15	M	7–8	14	C
13	25	M	20–21	24	C
14^##	39	F	18	36	C
15*^##	34	M	–	30	C
16*^##	28	M	22–23	25	C
17^###	24	M	–	10	C
18^###	21	F	–	7	C
19	16	M	–	14	C

C, caregiver; P, patient
*Patients were misdiagnosed with schizophrenia spectrum disorder, bipolar disorder, and other psychiatric illnesses for multiple years in some cases, which resulted in substantial delays in diagnosis and appropriate treatment
^#Siblings set 1
^##Siblings set 2
^###Siblings set 3
^aPatient deceased

ISSN: 1750-1172