#263 Ehlers-Danlos Syndromes with Izzy Kornblau

We return in person to record at NBC Stamford Studios to learn about Ehlers-Danlos syndromes, we are joined by cardiovascular genetic counselor, patient advocate, and YouTuber Izzy Kornblau. Izzy Kornblau, MS, CGC, is a cardiovascular genetic counselor at the Mount Sinai Medical Center in New York. Izzy has over 3 years of research experience in the Ehlers-Danlos syndromes (EDS). Her current research focus is investigating the genetic etiology of hypermobile Ehlers-Danlos syndrome using a candidate gene first identified by the medical university of South Carolina.  Izzy began making YouTube videos in 2018. content includes educational videos about genetics, genetic counseling, EDS, and navigating the healthcare system and social  situations with a chronic illness. She graduated with a master’s of genetic counseling from the Icahn School of Medicine at Mount Sinai in 2023 and completed her undergraduate degree at Washington University in St. Louis in 2019. She has over 45,000 YouTube subscribers with over 100 published videos.  On This Episode We Discuss:   Izzy’s Youtube channel success covering genetics, genetic counseling, EDS, and navigating healthcare with a chronic illness. Insights into Ehlers-Danlos syndromes: Understanding different types under the EDS umbrella and their impact on individuals and families. Personal journey: A genetic counselor and individual with EDS – how personal experience shapes genetic counseling approach. Personal insights in supporting patients and families dealing with EDS: Leveraging firsthand knowledge to provide effective support. Signs and referrals for EDS evaluation: Addressing the often-overlooked condition and signs that may prompt a genetics referral. Challenges and opportunities in career as a genetic counselor with EDS: Shaping perspective and influencing genetic counseling approach. Advice for those newly diagnosed with EDS: Providing guidance, especially on self-advocacy. Fostering community and support: Building connections for patients and peers dealing with genetic conditions. Research on hypermobile EDS genetic etiology: Investigating candidate genes and contributing to the understanding of the condition. Research background informing genetic counseling: How a research background shapes the approach to genetic counseling, particularly in EDS. Tips for navigating genetic conditions and healthcare: Advice for individuals and families facing challenges in these areas. Key issues in genetics and healthcare accessibility: Discussing important challenges that need more attention. Importance of raising awareness about genetic conditions: The impact on early diagnosis and treatment. Legacy in the field of genetics: As a counselor and content creator, the desired impact on the field and community.   Check out Izzy’s YouTube channel. We recommend this video where Kira and Izzy react to genetic scenes in TV shows like Glee, Grey’s Anatomy, and Broad City.    Stay tuned for the next new episode of DNA Today on Friday November 24th, 2023! New episodes are released every Friday. In the meantime, you can binge over 260 other episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “DNA Today”. Episodes since 2021 are also recorded with video which you can watch on our YouTube channel.     DNA Today is hosted and produced by Kira Dineen. Our social media lead is Corinne Merlino. Our video lead is Amanda Andreoli. Our Outreach Intern is Sanya Tinaikar. Our Social Media Intern is Kajal Patel. And our Graphic Designer Ashlyn Enokian.   See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, DNAToday.com. Questions/inquiries can be sent to [email protected].