Which advice would you give to someone who has just been diagnosed with Hereditary Hemorrhagic Telangiectasia?

Advice for the newly diagnosed with Hereditary Hemorrhagic Telangiectasia, written by people who have lived it. What they wish they had known on day one.

Original

Primero le diria que se informara seriamente sobre la enfermedad contactandose con centros y medicos de referencia. No todo lo que se ve en internet y se escucha por ahi es cierto.
Estar informado es la mejor herramienta.

Which advice would you give to someone who has just been diagnosed with Hereditary Hemorrhagic Telangiectasia?

Advice for the newly diagnosed with Hereditary Hemorrhagic Telangiectasia, written by people who have lived it. What they wish they had known on day one.

Original

Translated