166. Fragile X Syndrome: A Silent Factor in Infertility
On this episode of Talking Away The Taboo, Estie Rose, MS, CGC, Heather Hipp, MD, and Gail Heyman, join Aimee Baron, MD for the second episode of our 5-part IWSTHAB x JSCREEN Podcast series is all about Fragile X. When people think of genetic testing before pregnancy, they often think of Tay-Sachs or cystic fibrosis—but Fragile X is just as important and far less understood. In this episode, Estie Rose and Dr. Heather Hipp explain the difference between recessive and X-linked conditions, what it means to be a Fragile X carrier, and how it can affect fertility and family planning.
We also hear from Gail Heyman, who shares her deeply personal journey navigating Fragile X in her own family—and how that led her to advocacy. Whether you're building your family or supporting someone who is, this episode is filled with insight, honesty, and heart.
-Click here to watch Part 1: Introduction to Genetics and Infertility
More about Estie:
Estie Rose is a certified genetic counselor at jscreen. She has a special interest in community education and serves as a resource for individuals who are facing genetic health issues.
Connect with Estie:
-Follow her on Instagram
More about Heather:
Dr. Heather Hipp is a Reproductive Endocrinology and Infertility (REI) physician and an Associate Professor at Emory University School of Medicine. She earned her undergraduate degree at Duke University and then her MD degree at Emory University, where she continued her training in residency and fellowship. She is the Program Director for the REI fellowship at Emory and serves as chair for the American Society for Reproductive Medicine Education Committee. Her profession memberships include American College of Obstetrics and Gynecology, American Society for Reproductive Medicine, Alpha Omega Alpha Honor Society, and American Gynecological & Obstetrical Society. She is also on the National Fragile X Foundation Scientific and Clinical Advisory Committee. Her research focuses on women who are carriers for the fragile X mutation and their risk of premature ovarian insufficiency, as well as trends and outcomes of in-vitro fertilization (IVF) in the United States.
More about Gail:
Gail Heyman is a passionate advocate and leader in the Fragile X community. After her son was diagnosed in 1989, she co-founded the Fragile X Association of Georgia and has served as its director ever since. Her family’s experience—spanning three generations affected by Fragile X conditions—fuels her tireless work to raise awareness, promote research, and support others navigating similar challenges. Gail also serves on JScreen’s advisory board and has received national recognition for her leadership in genetic advocacy and inclusion.
-Click here to learn more about Gail's story
-Check out Carly Heyman's book, My eXtra Special Brother
-Learn more about Fragile X here
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