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Team Titin is a nonprofit organization with the mission of serving those living with, caring for, or researching titin (TTN) related muscle and heart disorders.
• , , , et al. Successful heart transplant in a child with congenital core myopathy and delayed-onset restrictive cardiomyopathy due to recessive mutations in the titin (TTN) gene . Pediatr Transplant. ; :e14561. doi:10.1111/petr.14561 • . Titin and centronuclear myopathy: the tip of the iceberg for TTN-ic mutations? Neurology. ; ( ): - . doi:10.1212/WNL.0b013e3182a6cc43 • , , , , , .
A longer version of this article was published in the journal Narrative Inquiry in Bioethics as part of a special issue on patients’ experiences with genetic testing. “Negative.” “Normal.” “Fails to confirm the diagnosis of . . .” “Etiology of the patient’s disease phenotype remains unknown.” These are words I heard repeatedly in the first 11 years of my son’s life.
As a journalist, you can create a free Muck Rack account to customize your profile, list your contact preferences, and upload a portfolio of your best work.
