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Recent episodes
Defying Cystic Fibrosis One Mountain at a Time [Rebroadcast]
Apr 23, 2024
Unknown duration
A Later Abortion Story
Feb 13, 2024
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Hypermobile Ehlers-Danlos Syndrome: An Invisible Condition
Jan 2, 2024
Unknown duration
A Waiting Game & Another Diagnosis
Dec 12, 2023
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Breaking Taboos & Leaving Room for Grief
Nov 28, 2023
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| Date | Episode | Description | Length | ||||||
|---|---|---|---|---|---|---|---|---|---|
| 4/23/24 | ![Defying Cystic Fibrosis One Mountain at a Time [Rebroadcast] episode artwork](https://d3t3ozftmdmh3i.cloudfront.net/staging/podcast_uploaded_nologo/2167683/2167683-1566081592713-7ed1852c9e13f.jpg) Defying Cystic Fibrosis One Mountain at a Time [Rebroadcast] | This episode was originally published in August 2018. Last Sunday, Sophie ran the London Marathon—her first of 36 marathons she plans to run in 36 days, as she raises money for Cystic Fibrosis Trust. You can follow Sophie's progress on Instagram @sophiegraceholmes Sophie Grace Holmes was born with Classic Cystic Fibrosis (CF). When she was 19, a doctor told her she was going to die within a few years. She set out to prove him wrong, quitting her office job and organizing her life around health and fitness. Sophie is now 27 years old. She is a fitness model, a trainer, a massage therapist and a motivational speaker. She thrives on challenges, and her many accomplishments include completing a 100k and summiting Mt. Kilimanjaro and Mt. Blanc. Links and Resources Sophie on Instagram Crossing for a Cure on Instagram Piper’s Angels Sophie’s website Cystic Fibrosis Trust (U.K. org) The Cystic Fibrosis Foundation (U.S. org) Newborn Screening in the U.K. Newborn Screening in the U.S. Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! 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. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list. | — | ||||||
| 2/13/24 |  A Later Abortion Story | This episode was originally published in February 2019. On June 24, 2024, Roe v. Wade was overturned. A few related links have been updated. 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 Erika & Garin on Twitter: @RHAVote 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. Additional links for 2024 Tolentino, Jia. “We're Not Going Back to the Time Before Roe. We're Going Somewhere Worse.” The New Yorker. June 24, 2022. Hercher, Laura. "Genetic Counselors Scramble Post-Roe to Provide Routine Pregnancy Services without Being Accused of a Crime." Scientific American. August 23, 2022. Do you have a story to share related to abortion and genetics? Send. an email to podcast@greygenetics.com Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! 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. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list. | — | ||||||
| 1/2/24 |  Hypermobile Ehlers-Danlos Syndrome: An Invisible Condition | Alexandra Parker is a senior student at Sarah Lawrence College. Alex describes her journey to a diagnosis of Hypermobile Ehlers-Danlos Syndrome and the skepticism that she faced from medical professionals. She had to adjust emotionally and physically following her diagnosis with respect to sports. Self-advocacy has become an important part of Alex’s day to day. She discusses the importance of “being believed” in a medical setting and encourages others to seek out different medical professional expertise when needed. Alex was interviewed by guest host Kelsey Crocker, a second year genetic counseling student. Links and Resources The Ehlers-Danlos Society Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! 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. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list. | — | ||||||
| 12/12/23 |  A Waiting Game & Another Diagnosis | After losing her first son Alex at only 10 months of age to a rare genetic condition, Jill and her husband went on to have four more children. Jill’s youngest daughter, Katie, was always small from birth. By the time she was 15 months old, it was obvious that Katie’s growth was significantly delayed. By age 2, she had started on human growth hormone. At the time that we recorded this interview in 2021, Katie was 5 years old and had a suspected diagnosis of Russell Silver syndrome. Katie has since had genetic testing done and has been diagnosed with 22q Deletion syndrome. Jill shares how her experience with Alex meant that with each of her children, she felt like she was waiting for the other shoe to drop. She also discusses how her experience with Alex prepared her to be an excellent advocate for Katie. Links and Resources The Magic Foundation To hear part one of Jill's story about her first child, Alex, listen to the last episode: Breaking Taboos & Leaving Room for Grief Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! 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. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list. | — | ||||||
| 11/28/23 |  Breaking Taboos & Leaving Room for Grief | At 20 weeks of pregnancy, Jill learned that her son Alex had a diaphragmatic hernia. And a ventricular septal defect. An amniocentesis revealed a rare diagnosis of Mosaic Trisomy 5: some of her son’s cells had a typical number of chromosomes (46,XY) and some had an extra copy of chromosome #5. Jill shares a detailed account of her prenatal and neonatal journey, including the diagnosis of additional birth defects and complications and the lack of available information or anticipatory guidance for parents who know they will have a child in the NICU. Alex died when he was 10 months old. Jill explores the taboo around acknowledging parental exhaustion and burnout as well as the taboos surrounding talking about children who have died—which has the effect of isolating a grieving parent. She shares the importance of leaving room for grief and allowing people to talk about loved ones they have lost. Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! 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. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list. | — | ||||||
| 11/14/23 | Navigating the Uncertainty of a BRCA Mutation | When Marleah was 8 years old, her mother was diagnosed with breast cancer. When Marleah was in college, her mother had genetic testing done and learned that she carried a mutation in the BRCA2 gene. This finding explained the breast cancer in Marleah’s family and inspired Marleah’s career as a university professor, focused on communication and decision making surrounding hereditary cancer risk. Marleah met with a genetic counselor when she was in her PhD program but chose to wait until she was 25 before she had genetic testing done and learned that she also carried a BRCA2 mutation. Marleah shares her own journey as a previvor and discusses her ongoing work in the field. Links and Resources Cancer Communication Research Marleah’s Tedx Talk: How to Make Decisions Based on Uncertain Information Marleah as part of the CDC’s Bring Your Brave Campaign Marleah’s campaign video for the CDC Dean M, et al. “Shared Decision-Making Experiences of Couples with Inherited Cancer Risk Regarding Family Building.” J Health Commun. 2023 May 4;28(5):292-301. https://www.facingourrisk.org/BOAST/ Facing Our Risk of Cancer Empowered Connect with Marleah on Social Media Marleah on Twitter @marleahdeank Marleah on LinkedIn Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. Interested in digging deeper into the professional issues raised in the podcast? Consider joining the Patient Stories Club! Do you want to support Patient Stories? You can make a donation online! 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. Looking for a place to collect your family history and share with relatives? Check out the FamGenix app. Grey Genetics is no longer active on social media. To receive occasional email updates, sign up for our mailing list. | — | ||||||
| 7/7/20 | Androgen Insensitivity Syndrome (AIS): Finding Self-Acceptance and Connection | When Dawn was 15 years old, her parents were given a diagnosis for her which explained why her experience with puberty was different from that of other girls her age. Following the recommendations of doctors at the time, her parents told her that she did not have a uterus and would not be able to have biological children—but did not share the diagnosis of Androgen Insensitivity Syndrome (AIS) with her. At age 38, Dawn stumbled across this diagnosis when her 23andme results indicated that her karytoype was 46,XY, rather than the 46,XX karyotype that is typical for females. Dawn discusses how this diagnosis helped lead her to self-acceptance and to connection with others who have lived similar experiences. 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 AIS DSD Support Group InterACT Weiss, Rachel. “She sent 23andMe her DNA. They told her she's intersex.” Newsday. Updated December 31, 2019. 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. | — | ||||||
| 6/20/20 | Representation Matters: Increasing Diversity within Genetic Counseling | Bryana Rivers is a second year genetic counseling student in the University of Cincinnati Genetic Counseling Program. As an African American female in a field that is >90% White, Bryana has a passion for increasing diversity within the profession of genetic counseling. Bryana talks about possible reasons for the lack of diversity within the field, ways this might be addressed, and shares her own path to the field of genetic counseling. Story Reference Points: Bryana’s experience at her first NSGC annual conference @ 1:45 Bryana’s path to the field of genetic counseling and experience as a GC Assistant at Hopkins @ 3:23 Why does diversity matter? @ 6:53 Bryana’s own experiences as a patient who is an ethnic minority @ 8:26 How race came up in one of Bryana’s genetic counseling sessions @ 11:06 Less obvious impacts of race on genetic counseling sessions @ 15:59 Why is genetic counseling so White? How can we diversify? @ 17:40 Representation Matters-- and the experience of attending the Minority Genetics Professionals Meetup at NSGC @ 21:56 Gender diversity within genetic counseling… a topic for another podcast?! @ 24:32 The makeup of Bryana’s genetic counseling class & contrast with her undergrad experience @ 26:31 What White female genetic counselors should understand about diversity @ 28:49 Links and Resources Bryana’s blog post: ”This Is What I Know. Now What Can We Do? – Racial Diversity in Genetic Counseling” Articles cited by Bryana: Studying the Needles in the Haystack: A Qualitative Study of African-American and Latino Genetic Counselors. Amanda Kass and Larissa Veres. Human Genetics Theses and Capstones. The Joan H. Marks Graduate Program in Human Genetics. May 2016. Diversity in genetic counseling: past, present and future. Mittman Is. Downs K. Journal of Genetic Counseling. 2008 Aug;17(4):301-13. Connect with Bryana on Twitter@GcBry 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 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 appointme | — | ||||||
| 4/2/20 | 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. | — | ||||||
| 3/31/20 | 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. | — | ||||||
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| 3/17/20 | 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. | — | ||||||
| 3/3/20 | 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. | — | ||||||
| 2/18/20 | 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 | — | ||||||
| 1/21/20 | Unexpected Joys on the Scenic Route with Down Syndrome | Julie McConnel was in her mid 40s and hoping for a little girl to complete her family. Instead…. She had twin boys with Down syndrome. Julie shares her grief over the diagnosis, her concerns about whether or not she and her husband could handle twins with Down syndrome and their hesitation to parent—and how she now couldn’t imagine her life without Charlie and Milo. 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 Julie’s story on the NDSAN blog Julie’s guest blog post on Cedars Story: Changing Perceptions of Down Syndrome The National Down Syndrome Adoption Network National Down Syndrome Society Down Syndrome Diagnosis Network Kids’ Waivers: information on Katie Beckett and other similar programs Born This Way: a TV series that follows a group of seven young adults with Down syndrome “Genetic Testing and the Rush to Perfection,“ National Council on Disability, October 23, 2019. Follow Charlie and Milo on Social Media: Charlie and Milo on Instagram: @chucklesandmeatloaf Charlie and Milo on Facebook Related Grey Genetics News Corner blog posts: Mitigating Misinformation: Spreading Awareness for Down syndrome NIPS: More Than Just a Sex Reveal Adoption as an Option: The National Down Syndrome Adoption Network 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. | — | ||||||
| 1/7/20 | Down Syndrome & Adoption as an Option | Stephanie Thompson still vividly remembers when her son Christopher, now 27 years old, received a diagnosis of Down syndrome. As a young woman and a first time mother, the diagnosis came as a shock. What she wishes her younger self knew? That it would be okay. Stephanie worked for eleven years in many different roles within the Down Syndrome Association of Greater Cincinnati and has deep insights into when, where and how a diagnosis of Down syndrome is given to parents and how this can be handled better. Today, Stephanie is the Director of the National Down Syndrome Network (NDSAN), whose mission is to ensure that every child born with Down syndrome has the opportunity to grow up in a loving family. 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 National Down Syndrome Adoption Network Resources for Patients New & Expectant parent information NDSAN video for new & expectant parents List of local Down syndrome parent groups Babies with Down Syndrome: A New Parent’s Guide Resources for Medical Professionals Delivering a Down syndrome diagnosis Additional Resources for Medical Professionals Stephanie’s blog post on the Grey Genetics News Corner: Adoption as an Option: The National Down Syndrome Adoption Network Stephanie’s interview on The Lucky Few podcast: Adoption & Down Syndrome w/Stephanie Thompson from the NDSAN Connect with NDSAN on Social Media: NDSAN on Instagram: @ndsan321 NDSAN on Twitter: @dsadoption NDSAN on Facebook NDSAN on LinkedIn “National Council on Disability Recommends More Regulation of NIPT.” Genome Web, October 23, 2019. Genetic Testing and the Rush to Perfection, National Council on Disability, October 23, 2019. Donate to Patient Stories Leave us a review on iTunes Patient Stories on Twitter: @GreyGeneticsPod Patient Stories on Instagram: @patientstoriespodcast 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. | — | ||||||
| 12/24/19 | Patient Stories is taking a holiday break. More episodes in 2020! | Patient Stories is taking a break this week for the holidays. We'll be back in 2020 with new episodes. Check out all of our 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. | — | ||||||
| 12/10/19 | She with Lynch | Georgia Hurst lost one brother to colon cancer when he was only 36 years old. When her second brother was diagnosed with colon cancer, he had genetic testing done and tested positive for MLH1-associated Lynch syndrome. Georgia went on to also test positive for Lynch syndrome. While she credits her Lynch syndrome diagnosis with ensuring regular and life-saving colonoscopies, her total hysterectomy had significant consequences for her health. Georgia shares insights on the repercussions of removing the ovaries as well as on the need for genetic testing to be approached thoughtfully, with an eye toward medical actionability for the individual. 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 Blog posts by Georgia in Cure magazine NSGC’s tool: Find a Genetic Counselor Schedule a genetic counseling appointment through Grey Genetics Georgia’s interview on the DNA Today podcast Georgia’s interview together with Ellen Matloff on the We Have Cancer podcast Connect with Georgia on Social Media: Georgia on Twitter: @_GeorgiaHurst Follow #GenCSM Kamp, Bailey, “Unearthing The Past That Could Affect Your Future: How Family Health History Could Change Your Life.” Grey Genetics News Corner Blog post. Read more about cancer genetics 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. | — | ||||||
| 11/26/19 | Family Health History and a Missed Diagnosis of Lynch Syndrome | Ann Jeffers Brown has a total of fifteen years’ experience in both clinic and industry. In this episode, she shares a case from early in her career: a late diagnosis of Lynch syndrome. Her experience with a Lynch syndrome patient who missed out on the opportunity of potentially life-saving information, continues to motivate her to this day to spread awareness about the significance of cancer family history, the importance of recognizing patterns of hereditary cancer within a family, and the potential for diagnostic genetic testing to provide different and potentially life-saving medical 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. Tools for Collecting Family Health History FamHis Surgeon General: My Family Health Portrait NIH: Families SHARE Family HealthLink TapGenes Links and Resources Grey Genetics News Corner blog post: Why Have You Never Heard of Lynch Syndrome? NSGC’s tool: Find a Genetic Counselor Schedule a genetic counseling appointment through Grey Genetics Order a family history review through Grey Genetics Connect with Ann on LinkedIn 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. | — | ||||||
| 11/12/19 | Not Parent Expected (NPE): DNA, Identity, and Changing Family History | Like millions of other Americans, Alicia Valladao did a DNA ancestry test when there was a sale, eager to learn more about her roots. Through the testing, she was surprised to learn that her biological father was not who she had thought he was. Alicia discusses the identity crisis and disenfranchised grief that followed, where and how she found support, and how this information has impacted her family relationships. Alicia has become active in Not Parent Expected, or NPE Groups, and is also currently writing a memoir. 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 Alicia’s story on the NPE Podcast Description without hyperlink: DNAngels Facebook Group DNA Surprise Support Facebook Group NPE Only After The Discovery Facebook Group Watershed DNA: Genetic counseling services focused on genealogy and ancestry. A DNA Guide for Adoptees: addresses topics relevant to anyone doing a family search Connect with Alicia on Social Media: Alicia on Facebook Alicia on Instagram: @notparentexpected Alicia on Twitter: @npealicia 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. | — | ||||||
| 10/29/19 | Beyond Survivorship: A Fresh Chapter | At 19, Terri Wingham learned that she had inherited a BRCA1 mutation from her father. At 23, she started an enhanced breast screening protocol, and at age 30 she was diagnosed with triple negative breast cancer. While she expected cancer to be awful, she didn’t expect Surviving cancer to be so difficult. Her struggle with depression and to find meaning and connection in this new phase of her life led her to found A Fresh Chapter—a non-profit organization that facilitates volunteer and leadership experiences to empower people impacted by cancer to reframe adversity and discover possibility and purpose in their lives. 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 A Fresh Chapter Terri’s story on Grey Genetics' Patient Stories page Terri’s talk at Stanford Medicine X 2013 Man’s Search for Meaning on IndieBound. Connect with A Fresh Chapter on Social Media: On Twitter: @afreshchapter On Instagram: @afreshchapter On Facebook On LinkedIn Check out other Patient Stories podcast episodes. Read other Patient Stories on the Grey Genetics Patient Stories Page. If you'd like to share your story on this page, email us at patientstories@greygenetics.com. 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. | — | ||||||
| 10/15/19 | Losing, Living, and Laughing | Chelsea London Lloyd is an actress and comedian living in L.A. She holds a BA in theatre from USC. Growing up, her dad had ALS and her mom had breast cancer. Her mother’s breast cancer returned 17 years later at stage 4, which she has combated for the past three years. Chelsea interviews women with sick parents and features their stories on her blog, Daughters of Sick Parents. Next up is her podcast, DYING OF LAUGHTER, where she speaks with comedians who have a lost a parent. Email dyingoflaughter@gmail.com to be the first to know when it’s released this fall! 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 Chelsea’s website Chelsea’s blog: Daughters of Sick Parents Follow Chelsea on Instagram: @_ChelsWhoElse_ Follow Daughters of Sick Parents on Instagram: @daughtersofsickparents 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. | — | ||||||
| 10/1/19 | Black and BRCA Positive | When Erika was 7 years old, her mother was diagnosed with breast cancer; her mother was only 28 years old. At age 42, Erika’s mother was diagnosed with breast cancer for a second time and she was finally offered BRCA testing. Erika later learned that she also carried the same BRCA2 mutation and opted for a prophylactic bilateral mastectomy with reconstruction. After her own experience with genetic testing and the hard decisions that followed, Erika became motivated to advocate for other women facing the same situation, specifically young black women who are underserved by genetic counseling and testing. She writes and speaks often about her experience and is also the founding co-chair of the Young Leadership Council for the Basser Center for BRCA. 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 Erika’s website A selection of Erika’s related writings: “Genetic Counselors Of Color Tackle Racial, Ethnic Disparities In Health Care” “Phantom Pains: Life after a double mastectomy” “What No One Tells You About Your BRCA Mutation” “This Is How the American Healthcare System Is Failing Black Women” Connect with Erika on Social Media: Erika on Twitter: @quidditch424 Erika on Instagram: @quidditch424 Related Grey Genetics News Corner blog posts: ASBS recommends genetic testing for ALL women with breast cancer NCCN Expands Genetic Testing Criteria to Include More Women with Breast Cancer What Can 23andMe Results Tell You About Your Breast Cancer Risk? 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 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. | — | ||||||
| 9/17/19 | Resurrection Lily: A BRCA Memoir | Amy Byer Shainman, also known as the BRCA Responder, is a BRCA1 mutation carrier and previvor as well as a passionate patient advocate providing education and support for others with BRCA mutations and other hereditary cancer syndromes. Amy has appeared in numerous news articles and television segments sharing her story while stressing how important certified genetic counseling is in the genetic testing equation. She is the Executive Producer of the award winning BRCA documentary Pink & Blue: Colors of Hereditary Cancer, and an administrator of the Facebook Group BRCA Sisterhood, which has over 10,0000 members. She recently published a health and medical memoir, Resurrection Lily: The BRCA Gene, Hereditary Cancer, & Lifesaving Whispers from the Grandmother I Never Knew. 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 Amy’s website: BRCA Responder Buy Resurrection Lily through Indiebound Watch Pink and Blue: Colors of Hereditary Cancer through Google Play or iTunes. Lady Parts The Film Connect with Amy on Social Media: Amy on Twitter: @BRCAResponder BRCAResponder on Instagram: @brcaresponder Amy on Facebook Amy on LinkedIn Buy Pretty is What Changes through Indiebound 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? 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. | — | ||||||
| 9/3/19 | A Short Life with Tay Sachs & Advocating for Preconceptual Carrier Screening | Shannon’s son James was a little slower than most babies to meet his developmental milestones, but it wasn’t until after he had his first seizures that he was finally diagnosed with Tay-Sachs, a rare, inherited, autosomal recessive condition that progressively destroys nerve cells in the brain and spinal cord. Shannon and her husband had a total of just 27 months with James. Shannon shares how after receiving the diagnosis, she learned to live in the moment and appreciate the time she had with him. Her experience has also made her an advocate for offering patients expanded carrier screening—ideally before pregnancy! Leave us a short voice message about your experience or thoughts on the episode here! We may use your message on a future show. Links and Resources National Tay Sachs and Allied Diseases Association Cure Tay-Sachs Foundation Connect with Shannon on Instagram: @shannonmiller9 Book recommendation: It’s OK that you’re not OK: Meeting Grief and Loss in a Culture That Doesn't Understand, by Megan Devine More from parents of children with Tay Sachs Carla Steckman’s Blog Interview with Carla on the Call Your Mother podcast: ”A Mother, Not a Hero” Three Short Years: Life Lessons in the Death of My Child, by Becky Benson The Still Point of the Turning World, by Emily Rapp Are you pregnant or planning a pregnancy and wanting to speak with a genetic counselor? Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. You can browse our Network of genetic counselors or go straight to our scheduling page to book an appointment. All genetic counseling appointments take place over secure, HIPAA-compliant video-conferencing or by phone. More resources from Grey Genetics Grey Genetics News Corner blog post: Expanded Carrier Screening & Frequently Asked Questions Prenatal Genetics Resources Page 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 Patient Stories is sponsored by Grey Genetics, an independent telehealth genetic counseling and consulting company. Schedule a genetic counseling appointment with a genetic counselor specialized in your area of concern. | — | ||||||
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