Sarcoidosis With Regina From Indiana

Send us Fan MailIn this episode of Rare Connection, host Joanna speaks with Regina, a sarcoidosis patient, author, and creative advocate who’s transforming her personal health journey into a source of awareness and empowerment.After her sarcoidosis diagnosis, Regina launched UniquelySarc, a handmade earring line dedicated to raising sarcoidosis awareness. She is the author of To Hell with Sarcoidosis and Other Illnesses and actively supports the rare disease community by moderating the AnCan sarcoidosis support group and leading a creative writing class to help others process their own journeys.This conversation explores the power of creativity, self-expression, and community support in navigating life with a rare disease.✅ In This Episode, You’ll Learn:Regina’s personal journey to a sarcoidosis diagnosisHow art and writing became part of her healingThe mission behind UniquelySarc and her bookWhy peer support groups are essentialHow creative outlets can help rare disease patients find their voice💬 Stay Connected:Subscribe to Rare Connection wherever you listen to podcastsFollow Rare Connection on Facebook, X, and LinkedInText me: Reach out directly using the link in the show notesSubscribe to my YouTube channel: Rare Chef🧠 Listener Bonus:There’s a quiz based on Regina’s answers available in the Community tab on YouTube and in the show notes—test your knowledge and keep the conversation going!⚠️ Medical Disclaimer:This podcast is for educational and awareness purposes only and should not be used as medical advice. Always consult your healthcare provider for your individual medical needs.💛 Suicide Prevention Resources:If you or someone you know is struggling:Call or text 988 for the Suicide & Crisis LifelineText “HELLO” to 741741 to reach the Crisis Text LineYou are not alone. Help is always available.Chapter MarkersOO:00 Intro02:14 Regina's diagnosis story04:28 Hospital finds mass on lungs05:37 Nonhodgkins Lymphoma misdiagnosis 08:04 Regina never looked up either Nonhodgkin's Lymphoma or Sarcoidosis0936 Early signs10:45 It took 4 years before Regina was diagnosed with Sarcoidosis11:05 Regina lost 50 LBS11:33 Regina is put on Steroids12{18 The most surprising thing about living with Sarcoidosis13:03 Changes over time.14:06 Uniquely Sarc inspiration15:51 Jewlery as a form of awareness19:25 Regina's first commissioned order20:26 Regina's Book "T0 Hell With Sarcoidosis and ohter conditions"23:41 Wtiting class25:42 Role of expression in processing illness27:52 The Journey Of The Purple Snowflake31:22 Advice for those who don't see themselves as creative35:18 Sarcoidosis Support Group38:26 New Drug trial39:17 common struggles41:02 compassion Patient progran44:13 How Friends and Family can support people with sarcoidosis46:26 advice to knewly diagnosed47:58 conclusionSupport the show