Patients living with: MPS III Sanfilippo Type Unknown

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 10 Ages: 3 to 49

30% Male
70% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

67% 2 - 6 times a year
33% Do not see a doctor or healthcare provider for this condition

Major episodes of care

been admitted to hospital
50% been admitted to hospital
been to the ER
50% been to the ER

A combination of treatments

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None 33% Other 33% Prescription medication 33%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Behavior problems
  • Changes in mental status

Average age at diagnosis

Average Age at Diagnosis
12 Year(s) old
5 46
Youngest AGE RANGE Oldest

Extensive testing

  • Genetic TestingGenetic Testing
  • Blood testsBlood tests
  • Urine testsUrine tests
  • BiopsyBiopsy
  • EEG (electroencephalogram, examines brain waves)EEG (electroencephalogram, examines brain waves)

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Genetics
  • Neurology
  • Other type of doctor or healthcare provider

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

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