It's a Rare Story

On this week's episode, Sarah sat down with Darcey. She was born with a Unilateral Cleft Lip and Palate. Darcey is 20 years old and currently entering her third year at the University of Missouri, where she is majoring in biochemistry. Her goal is to attend medical school and become a pediatric plastic surgeon with a focus on craniofacial reconstruction, inspired by her own journey.To learn more about the ELSA Act please visit: https://acpacares.org/advocacy/elsa/To support and to help advocate about the ELSA Act please visit: https://ujoin.co/campaigns/2473/actions/public?action_id=5391To stay up to date on everything she is up to, follow her on Instagram: @darcey_r__wright...Want your story to be featured on It's a Rare Story? Contact us today at [email protected] us on:TikTok: @ItsARareStoryInstagram: @ItsARareStoryYouTube: @ItsaRareStory ​

On this week's episode, Sarah sat down with Kat. She was born with Thrombocytopenia-Absent Radius (TAR) Syndrome and shares how navigating life has been.Kat is a campus staff minister with InterVarsity Christian Fellowship at Rider University and Rowan College of South Jersey. She is a mom to a two year old boy and has been married for 5 years to her college sweet heart. She hosts a podcast called No Day is Normal where she shares about her experience with Ableism and accessibility in today's culture.Instagram: @kathlyn.roffinaPodcast Instagram: @nodayisnormal ...Want your story to be featured on It's a Rare Story? Contact us today at [email protected] us on:TikTok: @ItsARareStoryInstagram: @ItsARareStoryYouTube:  @ItsaRareStory ​

On this week’s episode, Sarah sat down with Shannon. She sustained a traumatic brain injury when she was three and shares how life has been since then.Meet Shannon!Shannon is a graduate of Washington Township High School and Rowan College of South Jersey. She is a personal trainer at RiverWinds Community Center and has a certification in NASM, Women's Fitness Specialist and Senior Fitness Specialist. Shannon loves country music, fashion, arts and crafts, true crime, and cats.She has not let the traumatic brain injury stop her from pursuing all the things in life. Her story shines a light on overcoming obstacles.For "Saving Shannon - A Family's Story of Strength and Devotion" by Paul J. Mulhern, Shannon's dad, visit https://www.amazon.com/Saving-Shannon-Fami...Instagram: shanylizmulhern Tiktok: @shanylizmulhern_Facebook: Shannon Mulhern

On this week’s episode, Sarah sat down with Jireh. Within the past few years, he was diagnosed with Fabry Disease aa rare genetic lysosomal storage disorder, where you don't have enough of a certain enzyme that breaks down fats. These fats collect in blood vessels and tissues, raising the risk of heart attack, stroke and kidney failure.Meet Jireh!I’m living with a rare genetic condition called Fabry disease. Three years ago, my life changed completely when I survived a subarachnoid hemorrhage and a right pontine stroke. These 2 strokes lead to my Fabry Disease diagnosis and a long road of recovery—physically, emotionally, and spiritually.I share my journey of living with a rare disease, managing the complexities of recovery, and how my faith has been the foundation of my strength. From navigating symptoms to finding purpose in the pain, my hope is that my story encourages others facing impossible odds. If you're facing trials—I pray this conversation brings you hope.Be joyful in hope. Patient in affliction. And faithful in prayer.Romans 8:28For all the ways to connect with him:Instagram: www.instagram.com/jireh.recapsYouTube:  @jireh.recaps ​

On this week’s episode, Sarah sat down with Wesley & M.E. They’re twins and were born with Pfeiffer Syndrome which is a rare genetic disorder characterized by premature fusion of certain bones in the skull, hands, and feet. Meet Wesley and M.E.!!!Wesley and M.E. are from South Carolina. They both graduated from the College of Charleston with degrees in Communications and now are Program Coordinators for FACES: The National Craniofacial Association. They’ve been to different Children’s Craniofacial Association (CCA) events. They love traveling and living their best lives!!!Wesley is the Programs Coordinator at FACES and also works with Face Equality International to help the global facial difference community. She loves trying new food and traveling especially to Philadelphia because of all the different types of food.M.E. is the Programs Coordinator at FACES. She enjoys being on the water with family and friends. She loves all things Bravo TV.  She is a Mac and Cheese addict and has created her own instagram page  for all things Mac and Cheese! For all the ways to connect with them and the organizations they’ve been a part of…Instagram: Wesley: @wksand, M.E.: @Itsnotyouitsm.eChildren’s Craniofacial Association:  @ccakids https://ccakids.org/ FACES: The National Craniofacial Association: @facescraniofacialassociation https://www.faces-cranio.org/Face Equality International: @faceequalityint https://faceequalityinternational.org/

On this week's episode, Sarah sat down with Saida. Saida was born with Partial Trisomy 8q Duplication Syndrome that causes multiple rare diseases multiple chronic medical conditions and multiple chronic disabilities.Meet Saida!Saida Mahoney is a Rare Disease Warrior and Advocate. She loves doing everything she can to help people and advocate for all. She is a proud National Disability Advocate and Activist, a National Disability Advocate and Activist, a National Beauty Pageant Queen, Writer and Author of 9 Books and so much more. She is passionate about helping people in all ways and communities!To see what she is up to, make sure to follow her via...Facebook: @saida.mahoneyInstagram: @WONDERGIRLSAIDATwitter/X: @wondergirlsaida Wattpad e book channel: wondergirlsaida Spotify Podcast: WONDERGIRLSAIDA

Ever wondered what it's like to live with an ultra-rare disease? In this episode, Sarah, host of It's a Rare Story, opens up about her journey with Alpha-Mannosidosis. Hear the highs and lows of her journey, and how she's turned challenges into opportunities.Sarah takes you through the diagnosis journey, school experiences, and where she is today. Alpha-Mannosidosis is a degenerative genetic lysosomal disease which falls under the Glycoprotein Storage Disease category. Sarah went through a bone marrow transplant in hopes to stop Alpha-Mannosidosis from progressing.Today, she is finishing her Bachelors degree in Marketing, has a blog, Achieve the Impossible Today where she shares her current experiences, and is the Communications Officer for ISMRD (International Society for Mannosidosis and Related Diseases).Your story matters! If you're living with a rare disease or disability and want to share your experience to inspire others, we invite you to be a guest on It's a Rare Story. Please send us an email at [email protected] with a brief overview of your story. We're eager to hear from you!Visit the links below to learn more:Blog: www.AchieveTheImpossibleToday.comISMRD: www.ISMRD.orgAll information is from personal experience and for medical advice please reach out to a medical doctor. #raredisease #alphamannosidosis #disabilityawareness #podcast #inspiration #bmt #lysosomaldisease #advocacy #showyourstripes

Join Sarah as she introduces It's a Rare Story! You won't want to miss this trailer. Learn about where this podcast started, where it is currently, and where it is heading. To stay up to date, make sure to give us a subscribe!