Patients living with: Costello Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 21 Ages: 5 to 54

Male
48% Male
Female
52% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

40% 1 - 3 times per month
20% 1 or more times per week

Major episodes of care

been admitted to hospital
38% been admitted to hospital
had surgery
35% had surgery
been to the ER
27% been to the ER

A combination of treatments

image description
Prescription medication 29% Over-the-counter supplements, vitamins, herbs, remedies 24% Special diet/nutrition 19%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Gastrointestinal problems
  • Growth delay
  • Other

Average age at diagnosis

Average Age at Diagnosis
2 Year(s) old
<1 18
Youngest AGE RANGE Oldest

Extensive testing

  • Genetic TestingGenetic Testing
  • Physical examinationPhysical examination
  • Blood testsBlood tests
  • EKG (electrocardiogram, examines heart rhythm)EKG (electrocardiogram, examines heart rhythm)
  • Medical historyMedical history

Different types of tests

Different Types of Tests
16

Diagnosing specialty

  • Genetics

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

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