57 episodes

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.

Patient Stories with Grey Genetics Grey Genetics

    • Medicine
    • 4.9, 37 Ratings

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.

    Patient Stories is taking a hiatus…. Second Season to come in July!

    Patient Stories is taking a hiatus…. Second Season to come in July!

    Patient stories is taking a hiatus. We will be back in July with a second season and already have some interviews recorded that we are excited to share with you. We would also love to hear from our audience as we plan our second season! Why do you listen? What have you liked best? What would you like to hear more of?

    We’ve created a google form to collect your input!



    This is not a news podcast... Patient Stories do not expire! Check out all 50 Patient Stories podcast episodes to date here! 

    Read Patient Stories on the Grey Genetics Patient Stories Page.



    Help others find Patient Stories by leaving us a review on iTunes.
    Support Patient Stories by making a donation online!

    Patient Stories on Twitter: @GreyGeneticsPod

    Patient Stories on Instagram: @patientstoriespodcast


    Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment 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.

    Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

    • 1 min
    Between Worlds: Usher syndrome type III

    Between Worlds: Usher syndrome type III

    When Rebecca Alexander was 12 years old, she had trouble seeing the blackboard. She made her way from an optometrist to an ophthalmologist and was eventually diagnosed with Retinitis Pigmentosa (RP). Her parents were told that she would be blind by the time she was an adult. Rebecca also had a cookie bite of hearing loss. Through high school, she wore her hearing aids as little and as discreetly as possible. It wasn’t until Rebecca was in college that she experienced extreme tinnitus and saw an otolaryngologist that the diagnosis of Usher syndrome became real.

    Today, Rebecca Alexander is an award-winning author, psychotherapist, keynote speaker, group fitness instructor, disability advocate, and extreme athlete. She also has Usher syndrome type III, and is almost completely blind and deaf. Her book, Not Fade Away: A Memoir of Senses Lost and Found is being made into a major motion picture. GAP licensed a mantra from her memoir, “Breathe in Peace, Breathe out Fear,” and launched a campaign on International Women’s Day in March 2020, featuring Rebecca as well as another woman with Usher syndrome. The two t-shirts that GAP created have already sold out, but you can see the campaign video here!


    Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.



    Rebecca Alexander’s website

    Buy Rebecca's book: Not Fade Away: A Memoir of Senses Lost and Found

    Connect with Rebecca on Social Media:

    Rebecca on Twitter: @Reb_Alexander

    Rebecca on Instagram: @reb_alexander

    Rebecca on Facebook



    Resources related to Usher syndrome

    Usher Syndrome Coalition 

    Usher Syndrome Society

    Ava’s voice (in NJ)

    The Foundation Fighting Blindness

    The Hellen Keller National Center


    Check out other Patient Stories podcast episodes.


    Do you want to support Patient Stories? You can now make a donation online!

    Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

    Patient Stories on Twitter: @GreyGeneticsPod

    Patient Stories on Instagram: @patientstoriespodcast


    Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment 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.

    • 54 min
    Talking about Prader-Willi syndrome with the host of Walking with Freya

    Talking about Prader-Willi syndrome with the host of Walking with Freya

    As a newborn, Anne Fricke’s second daughter Freya had trouble nursing, slept really soundly, and had hypotonia (low muscle tone). At three and a half months of age, Freya was diagnosed with Prader-Willi syndrome. Anne shares her family’s experience with Freya’s initial diagnosis, how she found support within the Prader-Willi community, and what their challenges are now that Freya is 8 years old. Anne also shares how she has used writing and poetry to help process her feelings and how this led her to start her podcast, Walking With Freya.

    Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.



    Links and Resources

    Anne Fricke’s website

    Walking With Freya podcast episodes


    Episode 4: “Diagnosis”
    Episode 53: Anne interviews Eleanor about Grey Genetics and genetic counseling

    Anne’s poem “Kintsugi”

    Purchase the writing journal Anne created: There Is Joy To Be Found Here; a writing journal for parents of children with special needs



    Prader-Willi California Foundation (PWCF)

    Prader-Willi Syndrome Association (USA)



    Follow Anne’s podcast Walking with Freya on Social Media:

    Walking with Freya on Instagram: @walkingwithFreya

    Walking with Freya on Facebook



    Check out other Patient Stories podcast episodes.

    Read other Patient Stories on the Grey Genetics Patient Stories Page


    Do you want to support Patient Stories? You can now make a donation online!

    Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

    Patient Stories on Twitter: @GreyGeneticsPod

    Patient Stories on Instagram: @patientstoriespodcast


    Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment 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.

    Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

    • 39 min
    Becoming BRCAStrong

    Becoming BRCAStrong

    Tracy Milgram-Posner learned that she carried a BRCA2 mutation when she was just 21 years old. In the pre-Angelina Jolie era, feeling alone and isolated, she started a FacebookGroup, BRCAStrong, which has since grown into a 501(c)(3) non-profit whose mission is “To support, educate, inspire and empower Previvors and Survivors. To eliminate the feeling of isolation and help them feel whole again.” 

    Tracy shares how learning she had a BRCA2 mutation at such a young age impacted her life decisions;  how she feels she wasn’t given enough education related to the effects of having her ovaries removed at just 32 years old; how helpful telehealth genetic counseling was for her even years after her diagnosis—and how she wished she had received the benefit at the time of her diagnosis; and how she navigates talking to her young children about BRCA-related risks. (Spoiler: She gives a big shoutout to Proactive Genes!)

    Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.



    Links and Resources

    BRCAStrong

    Proactive Genes

    My Gene Counsel



    Connect with BRCAStrong on Social Media:

    BRCAStrong on Instagram: @brcastrong

    BRCAStrong on Facebook

    BRCAStrong on YouTube


    Check out other Patient Stories podcast episodes.

    Read other Patient Stories on the Grey Genetics Patient Stories Page


    Do you want to support Patient Stories? You can now make a donation online!

    Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

    Patient Stories on Twitter: @GreyGeneticsPod

    Patient Stories on Instagram: @patientstoriespodcast


    Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment 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.

    Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

    • 58 min
    Sandhoff Disease & A Spirit That Lives On

    Sandhoff Disease & A Spirit That Lives On

    Embree Ray Alexander was born June 11, 2017 and was healthy and happy for the first part of her life. Around seven months of age, it started to become clear that something was wrong. An MRI of the brain suggested a type of leukodystrophy, initially thought to be Tay Sachs disease. At eleven months of age, she was diagnosed with Sandhoff disease, an autosomal recessive condition that presents the same as Tay Sachs but is more rare.

    Embree’s parents, Caitrin and Kyle, were told that Embree’s life expectancy would be about two, possibly three years. Her disease progressed quickly, and they lost their daughter at just 15 months of age. Caitrin and Kyle love remembering Embree and are passionate about raising awareness for Sandhoff and other allied diseases. Since we recorded this interview, Caitrin has become pregnant through PGD (Preimplantation Genetic Diagnosis) and IVF, with support from Baby Quest, and is expecting a baby who has already tested negative for Sandhoff disease in July 2020.

    Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

    Links and Resources

    Embree's page on NTSAD & The Embree Alexander Fund

    National Tay-Sachs & Allied Diseases Association (NTSAD)

    BabyQuest Foundation


    Check out other Patient Stories podcast episodes.

    Read other Patient Stories on the Grey Genetics Patient Stories Page


    Do you want to support Patient Stories? You can now make a donation online!

    Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

    Patient Stories on Twitter: @GreyGeneticsPod

    Patient Stories on Instagram: @patientstoriespodcast


    Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment 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.

    Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here

    • 44 min
    A Later Abortion Story

    A Later Abortion Story

    Erika and Garin were 30 weeks into a complicated pregnancy when they learned that their pregnancy was not viable. Erika was denied an abortion due to New York’s 24 week cut-off so the couple travelled to Colorado to terminate her pregnancy. Their experience with New York’s abortion law, and the realization about how others were affected by it, led them to share their story publicly and advocate for reform.

    They founded the RHAvote campaign, the grassroots home for the Reproductive Health Act (RHA), a bill that decriminalized abortion in New York and brought the state’s regulation of abortion in line with Roe vs Wade. They worked alongside a statewide coalition, and in January 2019, New York finally passed the RHA after being stalled for almost a decade.

    After seeing the power of patient narratives first hand, they began organizing later abortion patients across the country (PatientForward.org). They are also parents to a 2½-year-old-daughter, Pepper.

    Have thoughts or a related story you’d like to share? Leave us a short voice message here! We may use your message on a future show.

    Related Links and Resources

    PatientForward

    RHAvote.com

    Tolentino, Jia. “Interview With a Woman Who Recently Had an Abortion at 32 Weeks.” Jezebel. June 15, 20216.

    Tolentino, Jia. “How Abortion Law in New York Will Change, and How It Won’t.” The New Yorker. January 19, 2019.

    The New York Times Editorial Board: A Woman’s Right (Series). The New York Times. December 28, 2018.

    Tolentino, Jia. “Interview with Dr.” The Hairpin. September 20, 2013.



    Check out other Patient Stories podcast episodes.

    Read other Patient Stories on the Grey Genetics Patient Stories Page


    Do you want to support Patient Stories? You can now make a donation online!

    Want to support Patient Stories in a non-monetary way? Leave us a review on iTunes, or share your favorite episodes on Social Media.

    Patient Stories on Twitter: @GreyGeneticsPod

    Patient Stories on Instagram: @patientstoriespodcast


    Are you looking for genetic counseling? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Book an appointment 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.

    Not quite ready for genetic counseling but still looking for guidance? Check out our new family history review services here.

    • 1 hr 31 min

Customer Reviews

4.9 out of 5
37 Ratings

37 Ratings

Effielyn ,

Love this podcast

Eleanor is such an empathetic and personable host. I love the content in her episodes and I’ve learned so much throughout this podcast.

humboldtmama ,

Gratitude

Thank you so much for this podcast! It is great to connect with these stories.

NPE Alicia ,

Informative Podcast

This podcast is professionally done and very informative. I’m always learning something new in each episode!

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