Getting Comprehensive Care

Since many body systems are involved in Fabry disease, clinical evaluations and care may require a medical team with expertise across many different specialties. These may include :

Nephrologists - Doctors in specialize in kidney disease

Geneticists - Doctors who specialize in inherited disorders

Genetic counselors - Counselors with expertise in inherited disorders

Neurologists - Doctors who specialize in nervous system disorders

Pediatricians - Doctors who treat patients eighteen and under

Cardiologists - Doctors who specialize in heart disease

Dermatologists - Doctors who specialize in skin disorders

Ophthalmologists - Doctors who specialize in treating the eye

Psychiatrists, psychologists, or social workers - Healthcare providers who are trained to treat mental health problems

A physician experienced in the care of people with genetic disorders such as Fabry disease can be helpful with coordinating your care across all of these specialties.

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. For help in outlining your symptoms for discussion with your doctors, click here to download a symptom checklist (PDF)