Patients living with: Hereditary Spastic Paraplegia

Data highlights from the Invitae Patient Insights Network

Who are we?

Who Are We?

Patients: 256 Ages: 4 to >60

Male
39% Male
Female
57% Female

Impact on our lives

iImpact On Our Lives

Frequent doctor visits

49% 2 - 6 times a year
17% One time a year

Major episodes of care

been admitted to hospital
37% been admitted to hospital
been to the ER
34% been to the ER
had surgery
29% had surgery

A combination of treatments

image description
Prescription medication 38% Over-the-counter supplements, vitamins, herbs, remedies 26% None 13%

Getting diagnosed

Getting diagnosed

Initial symptoms

Initial Symptoms
  • Other
  • Weakness
  • Neuropathy

Average age at diagnosis

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

Extensive testing

  • Genetic TestingGenetic Testing
  • Physical examinationPhysical examination
  • MRIMRI
  • Blood testsBlood tests
  • Family historyFamily history

Different types of tests

Different Types of Tests
22

Diagnosing specialty

  • Neurology
  • Genetics
  • Did not see a doctor or healthcare provider for this condition

Patients everywhere are eager to help find better treatments

Better Treatments

91% want to be contacted about trials

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