Patients living with: MPS II Hunter Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 276 Ages: 1 to >60

90% Male
7% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

43% 2 - 6 times a year
19% 1 - 3 times per month

Major episodes of care

been admitted to hospital
36% been admitted to hospital
had surgery
32% had surgery
been to the ER
32% been to the ER

A combination of treatments

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Medical therapy 39% Prescription medication 23% Over-the-counter supplements, vitamins, herbs, remedies 20%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Frequent infections
  • Behavior problems

Average age at diagnosis

Average Age at Diagnosis
3 Year(s) old
<1 21
Youngest AGE RANGE Oldest

Extensive testing

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

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Genetics
  • Pediatrics
  • Gastroenterology

Patients everywhere are eager to help find better treatments

Better Treatments

88% want to be contacted about trials

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