Patients living with: Idiopathic Intracranial Hypertension

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 75 Ages: 4 to 59

Male
4% Male
Female
96% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

29% 1 - 3 times per month
29% 2 - 6 times a year

Major episodes of care

been to the ER
45% been to the ER
been admitted to hospital
34% been admitted to hospital
had surgery
21% had surgery

A combination of treatments

image description
Prescription medication 40% Other 20% Special diet/nutrition 20%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Dizziness
  • Changes in senses
  • Fatigue

Average age at diagnosis

Average Age at Diagnosis
31 Year(s) old
9 50
Youngest AGE RANGE Oldest

Extensive testing

  • MRIMRI
  • OtherOther
  • CT scanCT scan
  • Blood testsBlood tests
  • Physical examinationPhysical examination

Different types of tests

Different Types of Tests
11

Diagnosing specialty

  • Neurology
  • Ophthalmology
  • Unsure

Patients everywhere are eager to help find better treatments

Better Treatments

89% want to be contacted about trials

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