Flexibility, pain, and fatigue are part of hypermobility EDS. In this conversation, Dr. Taylor Kerrins discusses Ehlers-Danlos Syndrome (EDS), particularly hypermobile EDS, covering its definition, symptoms, diagnosis, and management strategies. He shares personal experiences with the condition, the challenges of obtaining a diagnosis, and the importance of physical therapy and exercise. The discussion also touches on genetic testing and available support resources for patients. Taylor emphasizes the need for ongoing research and understanding of EDS, highlighting the complexities of the condition and the importance of community support.

Key Takeaways:

• EDS is a connective tissue disease with various types.
• Joint dislocations are common in individuals with hypermobile EDS.
• There is no specific genetic test for hypermobile EDS.
• Exercise is extremely helpful but must be tailored to the individual..
• Support groups provide valuable resources and community for EDS patients.
• Ongoing research is essential for understanding EDS better.

Dr. Taylor Kerrins is a Clinical Assistant Professor of Medical Genetics & Genomics at the Medical University of South Carolina.

Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com

Here are more resources related to today’s topic:

• The Ehlers Danlos Society
• Information on hEDS from the Marfan Society
• American Academy of Family Physicians handout from 2021
• The Norris Lab at MUSC

Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com

Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

Teratogens. Medications. Infections. Safe in Pregnancy. In this conversation, we explore the safety of exposure to certain things during pregnancy such as alcohol, beauty products, and yes even Tylenol. We learn more about how an agent or exposure is evaluated as being teratogenic as well as resources for pregnant individuals with questions.

Key Takeaways:

• Teratogens refers to an exposure (drug, chemical, infection, radiation, or substance) that can interfere with growth or development of an embryo or fetus.
• Every pregnancy has a background risk of 3% for birth defects, unrelated to exposures or family history.
• The timing, dosage, and other risk factors play a role in the impact of a potential teratogen.
• It’s crucial to differentiate between correlation and causation in studies.
• Pregnant individuals should consult healthcare providers about medication use.

Nevena is a board certified genetic counselor and an assistant professor at the University of South Florida (USF), division of Maternal Fetal Medicine and serves as the Program Coordinator and Teratogen Information Specialist at MotherToBaby Florida. In addition to providing exposure counseling at MTB Florida and USF Exposures Clinic, she provides prenatal and preconception genetic counseling in various clinics across the Tampa Bay area. Nevena is the Associated Program Director and provides both clinical supervision and coursework instruction for students form the USF Genetic Counseling Program. Nevena earned her MS in Genetic Counseling from the University of Texas Health Science Center in Houston in 2012. She is the president elect of Organization of Teratogen Information Services (OTS). The views and opinions shared on the podcast are her own and do not represent those of her employer.

Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com

Here are more resources related to today’s topic:

• Findageneticcounselor.org to search for a genetic counselor near you
• Birth Defects Registry & Prevention
• Mother to Baby website
• Human Teratogens course

Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com

Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ. Our Social Media Lead is Casey Lepley.

Transgender and gender diverse cancer care, privacy, community safety. On this episode of All Access DNA, we talk to Dr. Mittendorf about hereditary cancer considerations for people who are transgender and gender diverse. We discuss management guidelines, cancer risks and how knowing hereditary cancer risk may inform medical decisions. The conversation also delves into the significant concerns surrounding the privacy of medical data for transgender individuals. It highlights the fear of being identified as trans in medical records and the potential repercussions of such identification, especially in light of recent legal actions involving healthcare providers.

On This Episode We Discuss:

• The ways gender affirming care can be impacted by hereditary cancer risk.
• The effect of gender dysphoria in making medical decisions.
• Hormone therapy (HRT) and cancer risk
• Privacy concerns are heightened for the transgender community.
• Recent instances have raised alarms about data security in healthcare.
• Community safety is a significant concern related to medical data.
• There is a need for better protections for sensitive health information.

Dr. Mittendorf is an interdisciplinary scientist whose current research focuses on translational genomics and cancer care delivery, especially as it impacts populations with reduced access to care. They have extensive experience in genomic evidence synthesis, data modeling, web application development, community-driven research design, implementation science, and genomic applications in care delivery. They have cross-disciplinary training that covers epidemiology, qualitative research, bioethics, and informatics. Their PhD in biochemistry, with a focus on molecular biophysics, gives them a unique foundation to understand the molecular mechanisms at play in the setting of clinical genomics.

Please subscribe to this podcast on Apple Podcasts, Spotify, YouTube or wherever you get your podcasts to stay updated on new episodes of All Access DNA. Listen to past episodes on your favorite podcast play by searching “All Access DNA” or by streaming from our website at allaccessdna.podbean.com

Here are more resources related to today’s topic:

• Dr. Mittendorf’s website that includes links to research and resources
• CHESTcare website- CHESTcare stands for Cancer & Hereditary Risk Education & Support for Transgender & Nonbinary Individuals. CHESTcare is a resource for people who have had or are planning “top” surgery (gender-affirming mastectomy) or are taking or planning to take testosterone. Our goal is to empower you to make informed decisions about your health and cancer risk.
• YouTube video on Screening, prevention and gender affirming care for transgender people with mutations
• Hereditary cancer care for transgender and nonbinary people from FORCE
• Episode 6- How accessible is genetic testing? With Deanna Darnes
• Episode 19- Is cancer genetic? With Barry Tong
• Episode 26- Does genetics influence sex and gender? With Kim Zayhowski

Any inquiries on the podcast can be sent to AllAccessDNA@gmail.com

Note that this podcast is for entertainment and education and is not intended to be a substitute for professional medical advice. Please consult your physician with any questions you may have regarding your health.

The All Access DNA team includes: host, producer and editor Kate Wilson. The logo is designed by Designs by NKJ.