Systemic mastocytosis (SM) can significantly affect all aspects of people’s lives, and creating a shared understanding of these real-world impacts is crucial to support and empower those living with the disease. Research has shown that in addition to experiencing a reduced quality of life, people living with SM often encounter minimal awareness among healthcare providers and a lack of understanding from family, friends and colleagues. This can leave them feeling frustrated and isolated.1
To illuminate individuals’ aspirations in the face of a substantial disease burden, we are working with the patient organization Twist Out Cancer to introduce Colors of SM: Expressions of Life with Systemic Mastocytosis, a novel art program highlighting patients’ stories and experiences.
Colors of SM matches volunteer artists with people living with SM to create a unique piece of artwork that reflects their personal journey with the disease. The initiative aims to raise awareness of SM, which can lead to multiple chronic, potentially debilitating symptoms such as skin lesions, diarrhea, fatigue, bone pain and life-threatening anaphylaxis and, in advanced cases, organ system damage.1-4 People with SM may live in fear of severe, unexpected symptoms and isolate themselves to avoid unpredictable triggers, which may include foods and beverages, odors and scents, temperature changes, stress and more.1,5
As part of The Mast Cell Disease Society’s MastCellCon, an educational conference bringing the patient community together in July, we are showcasing the artworks at an inaugural art exhibit in Indianapolis. This Colors of SM gallery is part of Blueprint Medicines’ broader presence at the conference, reflecting our long-term commitment to empower the community with educational resources and support. A digital art gallery and participant stories are also on display on ColorsofSM.com.
“Through our ongoing interactions with the systemic mastocytosis community, people frequently emphasize feeling unseen and unheard, underscoring the need for a deeper understanding of the profound physical, emotional and social burdens they endure while living with the condition,” said Fatima Scipione, Vice President, Global Patient Affairs at Blueprint Medicines. “With Colors of SM, we aim to amplify the unique experiences, aspirations and hopes of those living with SM. I am grateful to all of the program participants for helping us continue to raise awareness and empower others by sharing their inspirational stories.”
The art gallery features watercolors, photographs and mixed media, along with personal statements from program participants and artists. For example, the artist Michele Kellner stated: “I heard and felt what SM had taken from her, but in the end, I was left seeing and hearing the enormity of her strength.” Jennifer N., who inspired this artist’s painting, shared: “SM has made me become more vulnerable, and I’ve learned that vulnerability is not the weakness I once thought it was.”
“Creative arts are a powerful medium for people to express their journey with a life-changing disease in ways that deeply resonate with others,” said Jenna Benn Shersher, founder and CEO of Twist Out Cancer, an organization that cultivates global communities by offering art programs for individuals living with various health conditions. “By visually representing the experiences of people with SM, the artwork provides a unique opportunity to help others understand the significant burden of living with this disease, while highlighting each individual’s strength and resilience in the face of these challenges.”
View the artwork and read more about the inspiring program participants at ColorsofSM.com. People living with or affected by SM – including care partners, family and friends – can now also apply for the second year of the program on the website.
References
1. Mesa RA et al. Cancer (Open Access). Published online August 23, 2022.
2. Pardanani A. Am J Hematol. 2 May 2023. 98: 1097-1116.
3. Gulen, T. Journal of Internal Medicine. 2016; 279; 211-228.
4. Akin, C. Cham, Switzerland: Springer Nature Switzerland AG 2020.
5. Theoharides TC, Valent P, Akin C. Mast Cells, Mastocytosis, and Related Disorders. N Engl J Med. 2015;373(2):163-172. doi:10.1056/NEJMra1409760
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