Nemaline Myopathy

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Nemaline Myopathy stories

OUR FOURTH DAUGHTER BORN STARTED TO FAIL AT ABOUT TWO WEAKS THAT WE NOTICED. FIRST WEIGHT LOSS THEN JUST PHYSICALLY WEAKER BY THE MINUTE. UNABLE TO SUCK SWALLOW AND BREATH. THROUGH TESTING AND DIAGNOSIS WE HAVE LEARNED SHE HAS A NEW MUTATION. MUSCLE BIOP

Views: 379 Aug 29, 2017, 12:33 AM by Mary Jo Draisma

NEEDLE IN A HAYSTACK

Views: 339 Aug 29, 2017, 9:09 AM by Greybeard

NEMALINE MYOPATHY

Views: 304 Aug 29, 2017, 1:32 AM by Laura

BRUNA'S STORY

Tenho 20 anos , descobri a Nemalínica com 3 anos de idade através de biópsia. Atualmente sou cadeiras e faço uso de ventilação mecânica nasal .

Views: 298 Jul 20, 2017, 9:29 PM by Bruna

IT'S BEEN A LONG ROAD

Views: 266 Aug 29, 2017, 9:16 AM by Peter

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