Patients living with: MPS I Hurler Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 236 Ages: <1 to >60

Male
45% Male
Female
55% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

29% 1 or more times per week
29% 2 - 6 times a year

Major episodes of care

been admitted to hospital
39% been admitted to hospital
had surgery
35% had surgery
been to the ER
26% been to the ER

A combination of treatments

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Prescription medication 33% Medical therapy 23% Over-the-counter supplements, vitamins, herbs, remedies 19%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Developmental delays
  • Growth delay

Average age at diagnosis

Average Age at Diagnosis
1 Year(s) old
<1 15
Youngest AGE RANGE Oldest

Extensive testing

  • Blood testsBlood tests
  • Urine testsUrine tests
  • Genetic TestingGenetic Testing
  • X-ray(s)X-ray(s)
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests
17

Diagnosing specialty

  • Genetics
  • Pediatrics
  • Metabolism

Patients everywhere are eager to help find better treatments

Better Treatments

52% want to be contacted about trials

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