Artists showcase the lives of patients living with rare disease through art

INDIANAPOLIS — Painter Russ Schnurr argues art can bring light to people's lives.

“Winter comes in the traditional way but it can also come in ways like ‘you have stage four cancer.’ ‘You have systemic mastocytosis.’ And you don’t even know what those terms mean, but you know you hurt," Schnurr said.

His watercolor painting, “A Light in Winter,” shows a somber scene of trees in the cold.

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It’s inspired by Jennifer S.’ journey living with systemic mastocytosis or SM.

The rare blood disease is often misdiagnosed, with symptoms often mistaken for severe allergic reactions.

“The first thing I notice is the light coming through the trees," Jennifer said.

SM can be unpredictable, debilitating and potentially life-threatening.

The ray of light beaming through the branches represents her unwavering resilience and hope.

“A Light in Winter” is one of six works created as a part of Colors of SM: Expressions of Life with Systemic Mastocytosis .

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Blueprint Medicines, a global biotech focused on allergy/inflammatory diseases, launched Colors of SM in collaboration with Twist Out Cancer, a nonprofit organization providing creative arts programs to people living with health conditions – with this being their first venture outside of cancer.

The art exhibit came to Indianapolis this month.

“It goes beyond systemic masto. For me, it’s important to hear the stories of those with rare diseases because when you hear rare disease you think it doesn’t affect that many people," Jennifer Nickolyn-Martin said.

Nickolyn-Martin also lives with SM.

She says it’s important for people like her to share their stories, so people can understand the complexities of living with a rare disease.

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“It can be very difficult for a person with an invisible disease to be believed by doctors and therefore get the diagnosis and treatments that they need. It can interfere with relationships, family, friends, coworkers," she said.

You can view all the artwork and individual participants stories here.