Patients living with: Bilateral Perisylvian Polymicrogyria

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 67 Ages: <1 to 29

Male
51% Male
Female
48% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

50% 2 - 6 times a year
25% 7 - 11 times a year

Major episodes of care

been to the ER
41% been to the ER
been admitted to hospital
33% been admitted to hospital
had surgery
26% had surgery

A combination of treatments

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Prescription medication 50% None 17% Over-the-counter supplements, vitamins, herbs, remedies 17%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Other
  • Weakness

Average age at diagnosis

Average Age at Diagnosis
2 Year(s) old
<1 16
Youngest AGE RANGE Oldest

Extensive testing

  • MRIMRI
  • CT scanCT scan
  • Genetic TestingGenetic Testing
  • Newborn screening Newborn screening
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests
12

Diagnosing specialty

  • Neurology
  • Genetics
  • Did not see a doctor or healthcare provider for this condition

Patients everywhere are eager to help find better treatments

Better Treatments

96% want to be contacted about trials

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