Colors of SM: Share Your SM Story

Blog Post Sponsored by Blueprint Medicines

It was a long and difficult road to getting a diagnosis of systemic mastocytosis (SM). Vanessa had been experiencing symptoms for more than ten years before receiving a diagnosis in 2023. During those years of searching, she experienced debilitating symptoms including severe fatigue, bone pain, brain fog and unpredictable allergic reactions. She initially downplayed her symptoms and convinced herself that what she was experiencing was just “normal” for everyone. “I hid my symptoms for many, many years,” she admits. “If I talked about them or thought about them, I thought they’re not real.” When the diagnosis finally came, she was overwhelmed with mixed emotions. Vanessa found herself isolated and convinced that SM would overshadow much of her life.

That’s when she discovered Colors of SM: Expressions of Life with Systemic Mastocytosis, an annual initiative by Blueprint Medicines, a Sanofi company, in partnership with Twist Out Cancer, a nonprofit organization providing creative arts programs to people living with a variety of health conditions. The program pairs SM patients (called “Inspirations”) with talented artists who translate their stories into powerful works of art. The individual shares their story, and, over the course of about six months, the artist creates a unique work of art that is reflective of the person’s journey with SM. Despite her fear of vulnerability, Vanessa applied. When she was paired with Chicago-based artist Emma Lyons, something shifted. Emma listened without judgment and asked gentle questions that helped Vanessa tell her story naturally. “It was like talking to a friend that you’ve known your whole life,” Vanessa recalls. Each conversation revealed another layer of Vanessa’s personality and journey, inspiring Emma’s painting, titled Look Deeper. “This piece is meant to be as multi-faceted as she is. SM is part of her journey, but it does not define her,” Emma describes.

Vanessa’s story illustrates the profound power of telling your truth. “Through this journey, I’ve learned that it’s okay to put myself first once in a while, and that acceptance doesn’t mean giving up — it means giving myself the grace to move forward,” she says. “I think telling my story is important so that family, friends and others may be more understanding for people that have a loved one going through the same thing, “I would definitely recommend doing the Colors of SM program. It was scary for me, and I would do it again.”

Applications for the 2026 Colors of SM program are now open through March 31, 2026. If you’re living with or caring for someone with SM and interested in participating, visit ColorsofSM.com to learn about your eligibility, apply and hear more from Vanessa and Emma in the 2025 event video recap.

To be considered, you must be a U.S. resident aged 18 or older. There is no cost to participate. 

This blog post was sponsored by Blueprint Medicines, a Sanofi Company. Blueprint is a valued member of our Partner in Hope program. We are grateful for their support of our community and their shared commitment to advancing education, awareness, and support for those affected by mast cell diseases.