Genetics isn’t always black and white. And the emotions and decisions surrounding genetic testing can be even more complex. Hosted by genetic counselor Eleanor Griffith, the show brings you the personal experiences of patients and genetic counselors.
Nadia Billous is a mother of two young sons, including 9-year-old Andryusha who was diagnosed with GRIN2B-related neurodevelopmental disorder. Nadia and her family are Ukrainian and lived in Kyiv at the time of Andryusha’s birth. At first, he was a typical, healthy baby but began to have some alarming symptoms around 3 months of age which led to a 7 year odyssey to identify this rare diagnosis. Andryusha was receiving therapies and interventions to help him gain strength and prove his quality of life which were abruptly impacted by the war in Ukraine. In this episode, Nadia talks about her life as a parent of a child with GRIN2B, the remarkable support her family received from the GRIN2B Foundation and rare disease community.
Nadia was interviewed by guest host Kristina Inman, a second year genetic counseling student. An interpreter assisted with this interview.
Related Resources
CureGRIN (https://curegrin.org/grin-disorder/)
Grin2B Foundation (http://grin2b.com/)
Donate to help support Nadezheda & her family (https://www.gofundme.com/f/ongoing-support-for-ukrainian-grin2b-family)
Read Nadia’s story here (https://www.greygenetics.com/patient-stories/)
Check out other Patient Stories podcast episodes. (https://www.greygenetics.com/podcast/)
Read other Patient Stories on the Grey Genetics Patient Stories Page (https://www.greygenetics.com/patient-stories/).
Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club (https://app.acuityscheduling.com/catalog.php?owner=15781669&category=Patient+Stories+Podcast)!
Do you want to support Patient Stories? You can make a donation online! (https://www.greygenetics.com/podcast/donate/)
Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment (https://www.greygenetics.com/schedule) with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.
Looking for a place to collect your family history and share with relatives? Check out the FamGenix app (https://apps.apple.com/us/app/famgenix-family-health-history/id1483520084).
Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list (https://d5ce20ca.sibforms.com/serve/MUIFAAvU8r2zwVXA3IocQ-suMOI0SEUeGOlRnmTtY0JIrNqONke9mTEGJIokfIw7z5B3pCmmTK2w8C9_MVV0EOAU3lUOCWzDvYmyMQ43Ys5zhGUywILcQTVMtFkS3g3l6eykoU5e2O75ZRMHK-YhWotmUWSp2StA34uVoC4Cvpf4Eb8FPWkaRt4-RzCCrPnvvPoP-h75DPvdVimU).
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9 Apr 2024
Navigating Genetic Testing in Pregnancy & the Path to FiND Genetics
When Ushta was pregnant with her third child, she found herself being told which tests she would be having done—rather than being offered options and having them explained to her. As a genetic counselor working in reproductive genetics, she had also started fielding many questions from individuals looking for more insight and direction in a time of expanding prenatal testing options. These experiences led her to leave her role in industry and start her own company: FiND Genetics (https://www.findgenetics.com/), an independent telemedicine genetics consulting practice. Ushta shares the path that led her to FiND Genetics, her perspective on recent changes within the field of genetic counseling, and how genetic counseling can empower patients to make informed decisions.
Links and Resources
FiND Genetics (https://www.findgenetics.com/)
Genotypecast Interview with Katie Stoll: Prenatal Screening, False Positives, and NYT's Coverage (https://podcasters.spotify.com/pod/show/genotypecast/episodes/Prenatal-Screening--False-Positives--and-NYTs-Coverage-e1citbc)
Connect with Ushta on Social Media
Ushta and FiND Genetics on Instagram: @findgenetics (https://www.instagram.com/findgenetics/)
Ushta on LinkedIn (https://www.linkedin.com/in/ushta)
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Send in a voice message: https://podcasters.spotify.com/pod/show/patient-stories-with-grey-genetics/message
26 Mar 2024
Next Chapter: Losing My Mother, Previving For My Children
Eleanor first interviewed Heather in 2018 (https://www.greygenetics.com/losing-my-mother-previving-for-my-children-heather-barnard/). At that time, Heather was several years out from completing a prophylactic mastectomy and oophorectomy related to her BRCA1 mutation and was living in Singapore. Her children were ages 10, 12, and 13. Heather shared her story of losing her mother to BRCA1-related breast cancer when she was only 13 and her determination to learn her risks and take all the steps she could to be there for her children. Today, Heather is living in Spain and her children are 15, 17, and 19. When I reached out to Heather about a follow-up Next Chapter interview, they had all just mailed their DNA to 23andMe for testing.
Resources
Listen to Heather’s 2018 interview with Patient Stories (https://www.greygenetics.com/losing-my-mother-previving-for-my-children-heather-barnard/)
My BRCA Story (Heather’s blog) (http://mybrcastory.blogspot.com/)
(https://www.facebook.com/groups/diepcjourney/)
Heather’s books on Amazon:
Why is Mommy Having Surgery? She Looks OK to Me: For families with BRCA risk and undergoing prophylactic surgery and implant reconstruction (https://www.amazon.com/Mommy-Having-Surgery-Looks-reconstruction/dp/1514713950/)
This Much I Know (https://www.amazon.com/This-Much-Know-Heather-Barnard/dp/1511580267)
Connect with Heather on Social Media
Heather on IG:
@expattravelmom (https://twitter.com/expattravelmom/)
@my_brca_story (https://www.instagram.com/my_brca_story/)
@learnwithheatherb (https://www.instagram.com/learnwithheatherb/)
Check out other Patient Stories podcast episodes. (https://www.greygenetics.com/podcast/)
Read other Patient Stories on the Grey Genetics Patient Stories Page (https://www.greygenetics.com/patient-stories/).
Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club (https://app.acuityscheduling.com/catalog.php?owner=15781669&category=Patient+Stories+Podcast)!
Do you want to support Patient Stories? You can make a donation online! (https://www.greygenetics.com/podcast/donate/)
Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment (https://www.greygenetics.com/schedule) with a genetic counselor specialized in your area of concern. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone.
Looking for a place to collect your family history and share with relatives? Check out the FamGenix app (https://apps.apple.com/us/app/famgenix-family-health-history/id1483520084).
Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list (https://d5ce20ca.sibforms.com/serve/MUIFAAvU8r2zwVXA3IocQ-suMOI0SEUeGOlRnmTtY0JIrNqONke9mTEGJIokfIw7z5B3pCmmTK2w8C9_MVV0EOAU3lUOCWzDvYmyMQ43Ys5zhGUywILcQTVMtFkS3g3l6eykoU5e2O75ZRMHK-YhWotmUWSp2StA34uVoC4Cvpf4Eb8FPWkaRt4-RzCCrPnvvPoP-h75DPvdVimU).
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Send in a voice message: https://podcasters.spotify.com/pod/show/patient-stories-with-grey-genetics/message
Reach and audience
Public platform figures. Ratings count people who left a rating, not total listeners.
Apple Podcasts (US)
4.8 / 5
53 ratings
Spotify
4.9 / 5
9 ratings
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