Patients living with: MPS VI Maroteaux-Lamy Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 24 Ages: 3 to 36

33% Male
63% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

38% 2 - 6 times a year
25% 7 - 11 times a year

Major episodes of care

had surgery
41% had surgery
been admitted to hospital
38% been admitted to hospital
been to the ER
21% been to the ER

A combination of treatments

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Medical therapy 54% Prescription medication 31% Over-the-counter supplements, vitamins, herbs, remedies 15%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Changes in senses
  • Growth delay

Average age at diagnosis

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

Extensive testing

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

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Genetics
  • Ophthalmology
  • Orthopedics

Patients everywhere are eager to help find better treatments

Better Treatments

79% want to be contacted about trials

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