Patients living with: MPS IIIB Sanfilippo B Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 134 Ages: 1 to 60

Male
45% Male
Female
52% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

33% 2 - 6 times a year
18% 1 - 3 times per month

Major episodes of care

been admitted to hospital
40% been admitted to hospital
been to the ER
38% been to the ER
had surgery
23% had surgery

A combination of treatments

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Prescription medication 25% Over-the-counter supplements, vitamins, herbs, remedies 22% None 20%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Behavior problems
  • Change in activity levels

Average age at diagnosis

Average Age at Diagnosis
5 Year(s) old
1 31
Youngest AGE RANGE Oldest

Extensive testing

  • Blood testsBlood tests
  • Genetic TestingGenetic Testing
  • Urine testsUrine tests
  • BiopsyBiopsy
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests
18

Diagnosing specialty

  • Genetics
  • Neurology
  • Metabolism

Patients everywhere are eager to help find better treatments

Better Treatments

93% want to be contacted about trials

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