Patients living with: MPS III Sanfilippo Type Unknown

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 30 Ages: 4 to 55

Male
53% Male
Female
43% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

50% 2 - 6 times a year
25% 1 - 3 times per month

Major episodes of care

been admitted to hospital
50% been admitted to hospital
been to the ER
38% been to the ER
had surgery
13% had surgery

A combination of treatments

image description
None 33% Prescription medication 33% Over-the-counter supplements, vitamins, herbs, remedies 17%

Getting diagnosed

Getting diagnosed

Initial symptoms

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

Average age at diagnosis

Average Age at Diagnosis
8 Year(s) old
1 46
Youngest AGE RANGE Oldest

Extensive testing

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

Different types of tests

Different Types of Tests
14

Diagnosing specialty

  • Genetics
  • Neurology
  • Endocrinology

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

Brought to you by:

Want to learn more?

Explore Directory Contact Us