Patients living with: Parry Romberg Syndrome

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 252 Ages: 2 to >60

Male
17% Male
Female
83% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

33% 2 - 6 times a year
23% Do not see a doctor or healthcare provider for this condition

Major episodes of care

had surgery
48% had surgery
been admitted to hospital
35% been admitted to hospital
been to the ER
16% been to the ER

A combination of treatments

image description
None 42% Prescription medication 31% Over-the-counter supplements, vitamins, herbs, remedies 11%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Skin problems
  • Pain

Average age at diagnosis

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

Extensive testing

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

Different types of tests

Different Types of Tests
19

Diagnosing specialty

  • Plastic Surgery
  • Dermatology
  • Neurology

Patients everywhere are eager to help find better treatments

Better Treatments

93% want to be contacted about trials

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