Getting Comprehensive Care

A team approach

Since many body systems are involved in Fabry disease, your care team may include different specialists at different times. A physician experienced in the care of people with genetic disorders such as Fabry disease may be helpful with coordinating your care across specialties.

  • Nephrologists specialize in kidney disease
  • Geneticists specialize in inherited disorders
  • Genetic counselors have expertise in inherited disorders
  • Neurologists specialize in nervous system disorders
  • Pediatricians treat patients aged eighteen and under
  • Cardiologists specialize in heart disease
  • Dermatologists specialize in skin disorders
  • Ophthalmologists specialize in treating the eye
  • Psychiatrists, psychologists, and social workers treat mental health

Participating in your care

To be an active participant in your own care, it is important to describe all of your symptoms during your medical visits. Be sure to include how often they occur and how severe they are. In addition, medical visits are a good time to ask any questions you may have about your disease and any current and future treatments. Keeping a journal of your symptoms can ensure that you are prepared to get the most out of your visits.

Download: Symptom Checklist

This checklist may help in outlining your symptoms for discussion with your doctors.

Fabry Disease Symptom Checklist (PDF)