Taboo Talks Ep.2: Sarah’s Story

Sarah Myatt is a single mom, elementary music teacher, and classical singer from Nova Scotia, Canada. She found out she carries the gene for Adrenoleukodystrophy (often shortened to ALD) after a phone call from a genetic counselor the very day she was to debut her first professional role at the Montreal Opera in Quebec, Canada in October, 2007. Her role involved riding a bicycle on stage in front of nearly 3000 people. That day, she knew her performance career was over, as she couldn’t picture herself performing onstage with a progressively demyelinating and disabling neurological disease. She inherited the gene mutation from her mom, who had unusually disabling symptoms from her mid-30s onward, which doctors likened to an adult male presentation of ALD called AMN.

She moved back to Nova Scotia in June of 2008 after she gave up on her pursuit of an operatic career and decided she wanted to start a family with her new-found boyfriend, who would soon become her husband. She endured genetic testing during three of her pregnancies, one of which ended in abortion. Sarah is here to discuss her experience with genetic testing and TFMR in Montreal and Nova Scotia, Canada.

She terminated a pregnancy at 14W3D at the Morgenthaler Clinic in Montreal on December 23, 2009. She was 31 years old at the time.

Listen to her full story on collectively coeXisting.

Taboo Talks

We launched our “Taboo Talks” series on the Remember The Girls Podcast, collectively coeXisting. Throughout this series, we will be highlighting different issues X-linked carriers face that are rarely discussed due to the stigmas and controversies that surround them. We hope that in doing this that we can emphasize that there are people, families, and loved ones behind these decisions. These conversations may be uncomfortable, but they must be heard, and we must respect the voices of the carriers and female patients who share their journeys. These are not tales – these are their lives, their journeys and their personal recollections of who they are in this world. These personal stories are meant to be shared and used as support for future women who may go through similar situations and come face to face with some tough decisions. As a disclaimer, this podcast series features sensitive topics. Understand that the opinions and topics do not express or represent the organizations personal feelings but are here to solely share the guest speaker’s journey and life’s experiences. These opinions and stories are theirs and theirs alone. Please also consult your doctor or a mental health professional regarding your own personal care.

For our first collection of episodes, The Stories Behind TFMR, we will be speaking to X-linked carriers who have experienced a TFMR, or termination for medical reasons. A TFMR occurs when a pregnancy is terminated due to a chromosomal, genetic or structural fetal anomaly, or where continuing the pregnancy would risk the health or life of the mother. We share these conversations to give a glimpse into the complicated world of family planning as an individual with an X-linked mutation. Please know that TFMR for X-linked conditions is not available in all US states or countries.