Patients living with: MPS IVA Morquio A Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 56 Ages: 1 to 57

Male
41% Male
Female
57% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

36% 2 - 6 times a year
20% 1 - 3 times per month

Major episodes of care

had surgery
43% had surgery
been admitted to hospital
39% been admitted to hospital
been to the ER
19% been to the ER

A combination of treatments

image description
Medical therapy 43% Prescription medication 26% Over-the-counter supplements, vitamins, herbs, remedies 24%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Growth delay
  • Weakness

Average age at diagnosis

Average Age at Diagnosis
4 Year(s) old
<1 38
Youngest AGE RANGE Oldest

Extensive testing

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

Different types of tests

Different Types of Tests
12

Diagnosing specialty

  • Genetics
  • Endocrinology
  • Orthopedics

Patients everywhere are eager to help find better treatments

Better Treatments

84% want to be contacted about trials

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