Patients living with:
MPS III Sanfilippo Type Unknown
Data highlights from the Invitae Patient Insights Network
Who are we?
Patients: 30 Ages: 5 to 56
Impact on our lives
Frequent doctor visits
50%
2 - 6 times a year
25%
1 - 3 times per month
Major episodes of care
50%
been admitted to hospital
A combination of treatments
None 33%
Prescription medication 33%
Over-the-counter supplements, vitamins, herbs, remedies 17%
Getting diagnosed
Initial symptoms
- Developmental delays
- Behavior problems
- Changes in mental status
Average age at diagnosis
1
46
Youngest
AGE RANGE
Oldest
Diagnosing specialty
- Genetics
- Neurology
- Endocrinology
Patients everywhere are eager to help find better treatments
90% want to be contacted about trials
Brought to you by:
Genetic Testing
Urine tests
Blood tests
EEG (electroencephalogram, examines brain waves)
Medical history
