80 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

    • Health & Fitness
    • 4.8 • 50 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…. Please take 1 minute to answer our survey!

    Patient Stories is taking a hiatus…. Please take 1 minute to answer our survey!

    Patient Stories is taking a hiatus. We plan to be back in the fall with a third season. We would love to better understand our audience. If you could take 1 minute to fill out this survey, we would appreciate it!



    Check out past Patient Stories podcast episodes.

    Read Patient Stories on the Grey Genetics Patient Stories Page


    Support Patient Stories! You can 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.

    • 50 sec
    Cancer, Genomics, and The Weight of Many Decisions

    Cancer, Genomics, and The Weight of Many Decisions

    While Carlos was studying Biology in the U.S., his father was diagnosed with Philadelphia Chromosome positive Acute Lymphocytic Leukemia (Ph+ALL) in Mexico. The same condition which he’d just learned about in school and had captured his intellectual curiosity was also now very personal. Carlos shares how genetic testing opened up options for his father’s course of treatment but also introduced myriad decisions to be made about his father’s care, the burden of which fell almost entirely upon his mother. He discusses how he thinks a genetic counselor could have helped the family through these many decisions and also shares his perspective on the importance of end of life care.

    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.



    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 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.

    • 48 min
    A Roll of the Dice

    A Roll of the Dice

    A couple gets engaged. They are both of Ashkenazi Jewish ancestry and read that carrier testing is recommended. They rightly assume that the most likely outcome is that they will not be carriers for the same condition. The results are a shock: Both are carriers for Mucolipidosis Type IV. They know they will use this information to inform their family planning decisions, but for years they vacillate between the expensive and involved option of IVF with preimplantation genetic diagnosis (PGD) or rolling the dice: trying to get pregnant naturally and pursuing prenatal testing, with the knowledge that a positive result for them would mean an abortion.



    Related Resources

    The Norton & Elaine Sarnoff Center for Jewish Genetics

    Mucolipidosis Type IV Foundation



    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.



    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.

    • 41 min
    A Mother's Journey with Sickle Cell Disease

    A Mother's Journey with Sickle Cell Disease

    When Layla was pregnant, she knew there was a 1 in 4 chance that her child would have Sickle Cell Disease. Routine newborn screening was done in London when Suki was 5 days old. She would be notified soon if her daughter Suki had Sickle Cell Disease, or even if she was a carrier and had Sickle Cell Trait. Like other parents, Layla was told that no news was good news. She was relieved. Then, when Suki was a month old, there was a knock at the door: Layla was told that Suki did have Sickle Cell Disease. She was handed pamphlets and told that Suki would have an appointment at the hospital when she was 3 months old. Layla shares how their world changed and what her experience with motherhood has been like. She also shares how racism has impacted Suki’s care, specifically during Covid-19, when Suki received care at a different hospital from where she is normally cared for by a dedicated team.



    Links and Resources

    Follow Suki on Instagram: @suki_lawson

    Follow Layla on Instagram: @layls.x

    Sickle Cell Society (UK)

    Sickle Cell Disease Association of America

    Addressing Health Disparities in Sickle Cell Disease. Interview with Barbara W. Harrison, MS, CGC. December 15, 2020. Genotypecast Podcast.

    Listen to another interview with a young woman who has sickle cell disease: Invisible and Unpredictable. Interview with Mary Adenturinmo. September 25, 2018.  Patient Stories Podcast.



    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.



    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 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.

    • 46 min
    Far Away with Fabry

    Far Away with Fabry

    Munique had suffered from pain since she was 4 years old, but it wasn’t until she was 15 years old that she finally received a diagnosis that explained why: Fabry Disease. After seeing multiple doctors, she, her father, and multiple other family members were finally diagnosed with Fabry Disease at the same time.

    In Brazil, treatment for Fabry was difficult as having a preexisting condition prevented her from getting health insurance. Although Brazil also has public universal healthcare, Fabry Disease was not recognized as a disease, meaning that a court battle was necessary to obtain coverage for treatment and specifically for the Enzyme Replacement Therapy (ERT) required to treat Fabry. Munique and other family members did successfully work with a lawyer to receive ERT. But the medication would then be periodically cut-off, requiring repeated returns to the courts for each interruption in treatment.

    After 10 years of struggling to receive care and after losing her father to Fabry when he was only 46 years old, Munique moved to the U.S., where her husband has family connections and where she now receives consistent ERT as well as care from the multiple specialists needed to care for people with Fabry Disease. Munique shares the challenges of finding a diagnosis, how Enzyme Replacement Therapy has improved her life, and how the symptoms of Fabry Disease have made it that much harder to adjust to life in a new country and to make friends.



    Links and Resources

    National Fabry Disease Foundation

    Munique’s Facebook page: https://www.facebook.com/ladyfabry

    Follow Munique on Instagram: @unic42



    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.

    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 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.

    • 26 min
    Epidermolysis Bullosa: Great Pain and Gigantic Love

    Epidermolysis Bullosa: Great Pain and Gigantic Love

    Silvia’s son Nicky was born with a devastating condition called Epidermolysis Bullosa (EB). On her websites and in her books, she describes his skin as fragile as a butterfly’s wing which can blister at the slightest touch, causing pain and scarring and leading to disfigurement and disability. Today Nicky is 24 years old. Silvia shares how her perspective on Nicky’s diagnosis was shaped by her previous experience of delivering a stillborn son at full term. She tells her story of caring for and advocating for a child with a rare disease, building a supportive community online in the early days of the internet, and recent efforts that give her more hope for the needed cure for EB.



    Links and Resources

    EB Info World

    Silvia’s blog

    Butterfly Talk: Silvia’s YouTube channel where she talks with other moms about coping and celebrating their kids with EB



    Books by Silvia Corradin:

    Butterfly Child: A Mother’s Journey: Silvia’s book about Nicky, his life with EB, and her journey as his mother

    Living With Epidermolysis Bullosa: A compilation of stories written by families touched by EB

    Losing Alex: The Night I Held An Angel: Silvia’s story of her experience with her first son Alex, who was stillborn at full term.

    Special Mommy Chronicles: A compilation of columns written by Silvia, offering insights, stories and struggles that go along with raising special kids.



    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.



    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

Customer Reviews

4.8 out of 5
50 Ratings

50 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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