Patients living with: Turner Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 237 Ages: <1 to >60

Male
2% Male
Female
94% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

56% 2 - 6 times a year
20% One time a year

Major episodes of care

been admitted to hospital
50% been admitted to hospital
had surgery
30% had surgery
been to the ER
20% been to the ER

A combination of treatments

image description
Prescription medication 49% Over-the-counter supplements, vitamins, herbs, remedies 26% None 13%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Growth delay
  • Other
  • Pain

Average age at diagnosis

Average Age at Diagnosis
13 Year(s) old
<1 46
Youngest AGE RANGE Oldest

Extensive testing

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

Different types of tests

Different Types of Tests
14

Diagnosing specialty

  • Endocrinology
  • Obstetrics/Gynecology
  • Genetics

Patients everywhere are eager to help find better treatments

Better Treatments

90% want to be contacted about trials

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