Sarcoidosis With Regina From Indiana Artwork

Rare Connection

Formerly Nutrition Equity, rare connection is an extension of the podcast to include all 10,000 rare conditions and not just those covered by the Medical Nutrition Equity Act. Some of the conditions may be the same, but I am trying to turn this into a learning experience for those in the medical feild, policy leaders, and those who are just interested in hearing about rare conditions and patient stories. Rare conditions are called zebras hence the zebra striped ribbon. More common conditions are called horses. Doctors tend to learn a lot about the common conditions, but rare conditions are a paragraph in a text book at best because the medical field isn't looking at the whole picture. Rare conditions when combined are actually bigger than cancer and strokes combined and if you have a rare condition you most likely have more than one or will develop another within your lifetime. As someone with a rare condition myself (Homocystinuria or HCU), know that having a rare condition can be very lonely. Thereis normally a phsycological aspect to any rare condition, and because of lack of understanding they often go undiagnosed or misdiagnosed which can cause serious health consequences or even death. If you are interested in talking and feel comfortable on camera please contact me at joanna.ball41@gmail.com. I have a visual version of this podcast on YouTube also under my cooking channel Rare Chef.

All Episodes

Rare Connection

Sarcoidosis With Regina From Indiana

June 24, 2025 • Joanna • Season 5 • Episode 4

Send us a text

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:

Regina’s personal journey to a sarcoidosis diagnosis
How art and writing became part of her healing
The mission behind UniquelySarc and her book
Why peer support groups are essential
How creative outlets can help rare disease patients find their voice

💬 Stay Connected:

Subscribe to Rare Connection wherever you listen to podcasts
Follow Rare Connection on Facebook, X, and LinkedIn
Text me: Reach out directly using the link in the show notes
Subscribe 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 Lifeline
Text “HELLO” to 741741 to reach the Crisis Text Line

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

Support the show