Patients living with:
MPS IIIC Sanfilippo C Syndrome
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 82 Ages: 7 to 40
Impact on our lives
Frequent doctor visits
68%
2 - 6 times a year
14%
7 - 11 times a year
Major episodes of care
41%
been admitted to hospital
A combination of treatments
Prescription medication 33%
Over-the-counter supplements, vitamins, herbs, remedies 25%
None 17%
Getting diagnosed
Initial symptoms
- Developmental delays
- Behavior problems
- Changes in mental status
Average age at diagnosis
<1
34
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Neurology
- Metabolism
Patients everywhere are eager to help find better treatments
91% want to be contacted about trials
Brought to you by:
Blood tests
Urine tests
Genetic Testing
Biopsy
EEG (electroencephalogram, examines brain waves)
