Ep. 66: Disclosing an X-linked diagnosis to extended family with Savannah & Alexis

from collectively coeXisting · host Remember The Girls

Our Carrier Connections program features a different X-linked condition each month with the goal to increase awareness of X-linked conditions and how they impact the lives of women and girls. From time to time we also feature topics important to the X-linked community. This month, we are highlighting the topic of discussing health history with your family and more specifically disclosing an X-linked diagnosis. Our guests for this episode are Savannah and Alexis. Savannah and her son, Titus, have ALD and were diagnosed through newborn screening in 2021. The Merrill’s are a military family currently stationed in Virginia. Due to ALD, they pursued IVF and are expecting an ALD-free baby girl in April of 2025. Alexis is a two boys under two mom! Her youngest son was picked up on Florida’s newborn screen in 2023 with adrenoleukodystrophy (ALD). Carrier Connections is sponsored by Kyowa Kirin and Amgen. For more information about our organization, check out ⁠⁠⁠⁠⁠⁠⁠⁠rememberthegirls.org⁠⁠⁠⁠⁠⁠⁠⁠.

Episode metadata supplied by the publisher feed · Published Dec 19, 2024

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Ep. 66: Disclosing an X-linked diagnosis to extended family with Savannah & Alexis

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