#64 Challenging the Label: Living and Thriving with Trisomy 18 Part 2

In this second part of our interview with Sartia Edwards, we continue a conversation about her son Elijah, who lives with Full Trisomy 18, also known as Edwards Syndrome.

 

Sarita Edwards, MHA is the CEO & President at the E.WE Foundation, a global healthcare advocacy organization for families living with Trisomy 18 (Edwards Syndrome) and other rare diseases. Sarita's son Elijah was diagnosed in utero with Full Trisomy 18 which began her efforts of advocacy and public policy. Sarita is recognized as a 2021 world's top patient expert and social health ambassador. She is an award winning advocate, global speaker, and host of the Being Rare Podcast. As a legislative advocate, Sarita provides insight on policy initiatives within her home state and across the country. Sarita has more than 20 years of professional experience in Healthcare Administration and is a candidate for her Doctorate in Health Science. She holds a Bachelor of Science in Health Science, a Masters in Healthcare Administration, and is a nationally certified Mental Health First Aid Instructor. Sarita lives in North Alabama with her husband Kareem and their five children.

 

Topics Covered:

• Navigating medical decision-making and advocating for hope
• Mental health support for caregivers of medically complex children
• Public policy changes needed in rare disease healthcare
• The power of patient-centered storytelling through Sarita’s Being Rare Podcast
• Advice and encouragement for families receiving a Trisomy 18 diagnosis

 

Hear more from Sarita Edwards on another podcast in the Gene Pool Media, DNA Today Episode #277. Be sure to subscribe to Sarita’s own podcast, Being Rare Podcast. Sarita mentioned our Executive Producer Kira Dineen’s on Episode #98. She also gave a shout out to Episode #106 exploring sickle cell, especially the misconception of people with sickle cell being drug seekers. Check out E.WE Foundation for all kinds of resources for rare diseases and more.

 

Stay tuned for the next new episode of “It Happened To Me”! In the meantime, you can listen to our previous episodes on Apple Podcasts, Spotify, streaming on the website, or any other podcast player by searching, “It Happened To Me”. 

 

“It Happened To Me” is created and hosted by Cathy Gildenhorn and Beth Glassman. DNA Today’s Kira Dineen is our executive producer and marketing lead. Amanda Andreoli is our associate producer. Ashlyn Enokian is our graphic designer.

 

See what else we are up to on Twitter, Instagram, Facebook, YouTube and our website, ItHappenedToMePod.com. Questions/inquiries can be sent to [e-mail].