Patients living with: MPS IVA Morquio A Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 70 Ages: 7 to >60

Male
39% Male
Female
57% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

38% 2 - 6 times a year
19% 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 45% Prescription medication 27% Over-the-counter supplements, vitamins, herbs, remedies 24%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Growth delay
  • Other
  • Change in activity levels

Average age at diagnosis

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

Extensive testing

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

Different types of tests

Different Types of Tests
14

Diagnosing specialty

  • Genetics
  • Orthopedics
  • Endocrinology

Patients everywhere are eager to help find better treatments

Better Treatments

83% want to be contacted about trials

Brought to you by:

Want to learn more?

Explore Directory Contact Us