Patients living with: Food Protein Induced Enterocolitis Syndrome (FPIES)

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 750 Ages: <1 to >60

54% Male
46% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

44% 2 - 6 times a year
16% 1 - 3 times per month

Major episodes of care

been to the ER
58% been to the ER
been admitted to hospital
37% been admitted to hospital
had surgery
4% had surgery

A combination of treatments

image description
Special diet/nutrition 51% Prescription medication 17% Medical foods 15%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Gastrointestinal problems
  • Change in bowel and/or bladder habits
  • Other

Average age at diagnosis

Average Age at Diagnosis
2 Year(s) old
<1 >60
Youngest AGE RANGE Oldest

Extensive testing

  • Medical historyMedical history
  • Physical examinationPhysical examination
  • Blood testsBlood tests
  • OtherOther
  • Family historyFamily history

Different types of tests

Different Types of Tests

Diagnosing specialty

  • Allergy/Immunology
  • Gastroenterology
  • Did not see a doctor or healthcare provider for this condition

Patients everywhere are eager to help find better treatments

Better Treatments

85% want to be contacted about trials

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