Fatima Scipione, Vice President of Global Patient Affairs at Blueprint Medicines, discusses the Colors of SM program.
Systemic mastocytosis (SM) is a rare disease usually caused by mutations of the KIT D816V gene. The disorder is characterized by uncontrolled mast cell proliferation and activation across multiple organ systems. Indolent SM accounts for approximately 90% of systemic mastocytosis. Common symptoms may include anaphylaxis, maculopapular rash, pruritis, diarrhea, brain fog, fatigue and bone pain. Most adults present with skin lesions, usually in the form of urticaria pigmentosa.
Colors of SM: Expressions of Life with Systemic Mastocytosis is a voluntary program dedicated to highlight the experiences of patients with SM. By partnering patients with artists who interpret a patients’ experiences into pieces of art, the initiative gives insights into what living with this rare disease really looks like. Artists and patients then showcase their work and experiences together at an annual art show.
Colors of SM was launched in partnership with Twist Out Cancer, a nonprofit organization that provides creative arts programs to people living with a variety of health conditions. The program aims to raise awareness about SM and the burden of disease on patients and foster an environment for change and advancement.
Ms. Scipione highlights how powerful it has been to see art communicate emotions, frustrations, resilience, and identity of these patients and how the program has provided visibility, connection, and understanding.
To learn more about SM and other rare autoimmune/anti-inflammatory conditions, visit https://checkrare.com/diseases/autoimmune-autoinflammatory-disorders/
