Rare Disease Advocates Highlight Triggers for Systemic Mastocytosis Symptoms

The Colors of SM program connects patients with artists to share stories and create art about living with this unpredictable condition.

Published on Feb. 21, 2026

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The Colors of SM program, now in its third year, pairs people living with the rare disease systemic mastocytosis (SM) with artists to create original artworks inspired by the patients' experiences. Through this creative collaboration, participants aim to illuminate the diverse challenges, expectations and hopes of those affected by SM, a chronic condition caused by the buildup of abnormal mast cells that can trigger a wide range of unpredictable symptoms.

Why it matters

SM is a little-known disease that can be difficult for patients to discuss and find support for. The Colors of SM program provides a platform for raising awareness, fostering community, and empowering those living with this condition to share their stories and advocate for better understanding and care.

The details

Vanessa, a wife and mother from North Dakota, struggled for over a decade to get an SM diagnosis and find ways to manage her unpredictable symptoms, which can be triggered by temperature changes, fragrances, certain foods, and stress. Through the Colors of SM program, she connected with artist Emma Lyons, who helped Vanessa translate her journey into an original artwork. This creative collaboration was a turning point for Vanessa, allowing her to better accept her diagnosis and realize that SM is part of her, but does not define her.

  • The Colors of SM program is now gearing up for its third year.
  • Vanessa was diagnosed with systemic mastocytosis at the Mayo Clinic more than ten years after first experiencing symptoms.

The players

Vanessa Hein

A wife and mother from North Dakota who was diagnosed with systemic mastocytosis more than ten years after first experiencing symptoms. She enjoys traveling, arts and crafts, and spending time with her family.

Emma Lyons

A self-trained artist based in Chicago who creates encouraging artwork in her home studio. Her work has been featured in solo and group exhibitions, as well as commissioned by clients like Prada, the Chicago Shakespeare Theater, and the Gatsby Speakeasy.

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What they’re saying

“Meeting artist Emma and sharing her story was a turning point, helping her move forward, accept her diagnosis and realize that SM is part of her, but does not define her.”

— Vanessa Hein (wach.com)

What’s next

The Colors of SM program is now accepting applications for its third year, encouraging eligible listeners to consider participating.

The takeaway

The Colors of SM program provides a powerful platform for raising awareness about the challenges of living with systemic mastocytosis, a rare and unpredictable disease. By empowering patients to share their stories through creative collaboration with artists, the program fosters community, acceptance, and a deeper understanding of this little-known condition.