Patients living with: Bilateral Frontal Polymicrogyria

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 26 Ages: 1 to 36

Male
62% Male
Female
31% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

67% 7 - 11 times a year
33% 2 - 6 times a year

Major episodes of care

been admitted to hospital
50% been admitted to hospital
been to the ER
40% been to the ER
had surgery
10% had surgery

A combination of treatments

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Prescription medication 50% Medical foods 33% Over-the-counter supplements, vitamins, herbs, remedies 17%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Developmental delays
  • Gastrointestinal problems

Average age at diagnosis

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

Extensive testing

  • MRIMRI

Different types of tests

Different Types of Tests
1

Diagnosing specialty

  • Neurology

Patients everywhere are eager to help find better treatments

Better Treatments

92% want to be contacted about trials

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