Blueprint Medicines has launched a novel art program to highlight the stories and lived experiences of people with systematic mastocytosis (SM), according to a recently published press release.
The founders of the program worked with Twist Out Cancer, an organization known for cultivating global communities by providing art programs for individuals who experience a variety of medical conditions, to introduce Colors of SM: Expressions of Life with Systematic Mastocytosis.
Research has demonstrated that individuals with SM experience a diminished quality of life, along with frequently confronting minimal awareness of their condition among health care providers, as well as a misunderstanding and misperception of the disease among family, friends and colleagues. This can lead to frustration and feelings of isolation.
Because SM can affect all aspects of an individual’s life, establishing a shared understanding of these real-world effects is vital to the support and empowerment of those with the disease. In Colors of SM, volunteer artists were matched with individuals with SM “to create a unique piece of artwork that reflects their personal journal with the disease.”
The goals of Colors of SM include raising awareness of SM, which can be associated with numerous chronic, potentially debilitating symptoms, including fatigue, skin lesions, diarrhea, bone pain, life-threatening anaphylaxis and more. In patients with advanced SM, organ system damage can occur.
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Many individuals with SM may live in fear of experiencing severe, unexpected symptoms and thus may isolate themselves in an effort to avoid unpredictable triggers. This may include foods and beverages, fluctuations in temperature, certain odors and anxiety or stress.
The Mast Cell Disease Society recently hosted MastCellCon—an educational conference in Indianapolis, IN intended to bring together the SM patient community. At the conference, the artwork inspired by individuals with SM was showcased at an inaugural art exhibit. The art gallery denotes the long-term commitment by Blueprint Medicines “to empower the [SM] community with educational resources and support,” the company stated. A digital art gallery can also be found at ColorsofSM.com.
“With Colors of SM, we aim to amplify the unique experiences, aspirations[,] and hopes of those living with SM,” said Fatima Scipione, Vice President of Global Patient Affairs at Blueprint Medicines.
Alongside the watercolor, photography and mixed media pieces, the art gallery showcases personal statements from the program participants and the artists.
“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,” Michele Kellner, one of the participating artists, stated about the patient he worked with. Jennifer N, the individual with SM who served as the inspiration for Michele’s painting, added, “SM has made me more vulnerable, and I’ve learned that vulnerability is not the weakness I once thought it was.”
Jenna Benn Shersher, founder and CEO of Twist Out Cancer, summarized her organization hopes to achieve through Colors of SM.
“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.”
People living with or affected by SM, including patients, caregivers, partners and friends, now can apply for the second year of the program at ColorsofSM.com.
