Visceral Myopathy: Miopatía viceral-deficit de la filamina A

Posted by romi1988 @romi1988, Aug 5 11:46pm

Alguien que comparta si tiene o conoce a alguien que tenga miopatía viceral, déficit de la filamina A, macro plaquetas?? Es una enfermedad poco frecuente. Con más síntomas (vasculares)

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Visceral myopathies are diseases that affect the smooth muscles inside the body. These muscles help move food and air through the digestive system, empty the bladder, and allow the uterus to contract and relax. When these muscles don’t work properly, it can cause serious problems with digestion, going to the bathroom, and pregnancy.

@romi1988, it sounds like your visceral myopathy is linked to mutations in the filamin A (FLNA) gene. What symptoms do you deal with? How is your condition being managed?

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Visceral myopathies are diseases that affect the smooth muscles inside the body. These muscles help move food and air through the digestive system, empty the bladder, and allow the uterus to contract and relax. When these muscles don’t work properly, it can cause serious problems with digestion, going to the bathroom, and pregnancy.

@romi1988, it sounds like your visceral myopathy is linked to mutations in the filamin A (FLNA) gene. What symptoms do you deal with? How is your condition being managed?

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Hola buenas tardes, mis hijos varones tienen esa patología. Mi nene de 4 es el más grave, posible varices intestinales. Y con alimentación oral casi nula. Se nutre con nutrición parenteral

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