Patients living with: Eosinophilic Cystitis

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 17 Ages: 14 to >60

Male
47% Male
Female
53% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

80% 2 - 6 times a year
20% 1 - 3 times per month

Major episodes of care

had surgery
44% had surgery
been admitted to hospital
31% been admitted to hospital
been to the ER
25% been to the ER

A combination of treatments

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Prescription medication 50% Over-the-counter supplements, vitamins, herbs, remedies 40% Medical foods 10%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Change in bowel and/or bladder habits
  • Pain
  • Frequent infections

Average age at diagnosis

Average Age at Diagnosis
43 Year(s) old
4 >60
Youngest AGE RANGE Oldest

Extensive testing

  • BiopsyBiopsy
  • Urine testsUrine tests
  • Physical examinationPhysical examination
  • CT scanCT scan
  • OtherOther

Different types of tests

Different Types of Tests
13

Diagnosing specialty

  • Urology
  • Child and Adolescent Psychiatry

Patients everywhere are eager to help find better treatments

Better Treatments

100% want to be contacted about trials

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