Alguien con síndrome de fanconi??
Mi hermano fue diagnosticado con Sindrome de Fanconi, esta es una enfermedad muy rara o poco frecuente, por esa razon a pesar de haber consultando con muchos medicos, ninguno de ellos tuvo nunca un caso como el de mi hermano. Alguien conoce un médico o lugar con experiencia en esa patología?? (NO confundir con anemia de fanconi).
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@garu26 Welcome to Mayo Clinic connect. i see that you have posted this question in both the "kidney and bladder" and "blood cancer" support groups.
Here is what the Merck Manual has to say about this condition: https://www.merckmanuals.com/home/kidney-and-urinary-tract-disorders/disorders-of-kidney-tubules/fanconi-syndrome
I don't know where you are located. A large teaching hospital associated with a university is a good place to go, or of course, Mayo Clinic [three location in the United States: Rochester, MN; Jacksonville, FL; Scottsdale, AZ].
Ginger
@gingerw ,Gracias por tu respuesta. Somos de Argentina, y ya no sabemos donde buscar.. Nos ayudaría saber si existe en algún lugar del mundo, un médico con experiencia en esa condición.
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@garu26 Mayo Clinic has three campuses in the United States, plus international appointment offices. These offices can assist you in contacting and getting an appointment with Mayo Clinic https://www.mayoclinic.org/departments-centers/international/appointments
To speak with them in the United States directly, you can use this link: http://mayocl.in/1mtmR63
Seeing that fanconi syndrome is considered a kidney issue, I think speaking to a highly qualified kidney specialist [nephrologist] may be your best option.
Ginger
Cleveland Clinic offers this detailed information about fanconi syndrome: https://my.clevelandclinic.org/health/diseases/24233-fanconi-syndrome