Taboo Talks Ep.5: Kristy’s Story

Kristy McCracken is an advocate and patient of an x-linked condition in the Urea Cycle Disorder family. Her official diagnosis is Ornithine Transcarbamylase deficiency, commonly referred to as OTC. Kristy is a member of many patient organizations for UCD and rare diseases and her biggest passion is being a mentor for those newly diagnosed or going through their own journey. Kristy terminated a pregnancy in 2017 after genetic testing confirmed it was a male with OTC and after concluding that her own life was at risk if the pregnancy continued. Kristy has since become a mother through adoption and is open with the entire experience. Her goal is to help other carriers and female patients never feel alone in this journey of rare disease and X-linked conditions.

Listen to her full story on ollectively 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.