In 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:
💬 Stay Connected:
🧠 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:
You are not alone. Help is always available.
Chapter Markers
OO:00 Intro
02:14 Regina's diagnosis story
04:28 Hospital finds mass on lungs
05:37 Nonhodgkins Lymphoma misdiagnosis
08:04 Regina never looked up either Nonhodgkin's Lymphoma or Sarcoidosis
0936 Early signs
10:45 It took 4 years before Regina was diagnosed with Sarcoidosis
11:05 Regina lost 50 LBS
11:33 Regina is put on Steroids
12{18 The most surprising thing about living with Sarcoidosis
13:03 Changes over time.
14:06 Uniquely Sarc inspiration
15:51 Jewlery as a form of awareness
19:25 Regina's first commissioned order
20:26 Regina's Book "T0 Hell With Sarcoidosis and ohter conditions"
23:41 Wtiting class
25:42 Role of expression in processing illness
27:52 The Journey Of The Purple Snowflake
31:22 Advice for those who don't see themselves as creative
35:18 Sarcoidosis Support Group
38:26 New Drug trial
39:17 common struggles
41:02 compassion Patient progran
44:13 How Friends and Family can support people with sarcoidosis
46:26 advice to knewly diagnosed
47:58 conclusion
