Art Brings Daily Impact of Rare Disease to Life
Vanessa spent more than a decade searching for the reason she was experiencing unpredictable symptoms including hives, bone pain, brain fog and fatigue. Stress, weather changes and scented products would trigger reactions that disrupted her daily life.
“I remember I was at work when I had one of my most severe reactions,” she recalls. The cleaning staff had used a popular cleaning product on the walls while I was in the office. I tried using my inhaler, but the smell quickly spread through the building and I couldn’t breathe. I had to leave for the day.”
Though she was dealing with serious and disruptive symptoms, Vanessa often did not want others to know.
“I hid my symptoms for many years, convincing myself that what I was going through was ‘normal’ for everyone,” she admits. “If I talked about how I was feeling, I would downplay my symptoms or tell myself they weren’t real.”
She even hid her fatigue from her husband. “I worked earlier hours so I could take naps before he came home. He never knew how tired I really was,” Vanessa shares.
Finally, with help from her health care team, including an allergist-immunologist and a hematologist-oncologist, Vanessa was diagnosed with systemic mastocytosis (SM). SM is a rare condition caused by the buildup of abnormal mast cells, which play a vital role in the body’s immune responses to allergens. This buildup causes chronic inflammation and can cause a wide range of potentially debilitating symptoms.
While she was relieved to have an answer, Vanessa found it was still challenging to explain her experiences with SM to others and advocate for her own needs.
Bringing Her Experience to Life
Last year, Vanessa learned about Colors of SM: Expressions of Life with Systemic Mastocytosis, an annual program that pairs people impacted by SM (called “Inspirations”) with talented artists who translate their stories into powerful works of art.
Colors of SM is offered 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.
Despite her fear of vulnerability, Vanessa joined the program and was paired with a Chicago-based artist, Emma Lyons.
“Talking to Emma was like connecting with a friend I’d known my whole life. It proved to be an unexpected turning point, allowing me to open up and reflect on my journey with SM through Emma’s eyes,” Vanessa recalls.
For Emma, listening to Vanessa’s story revealed the significant impact SM can have. “Before participating in the Colors of SM program, I had never heard of SM, but now I understand how much Vanessa faces each day because of her disease, and how resilient she truly is.”
The pair bonded quickly, and Vanessa felt inspired to speak freely and honestly. Each conversation revealed another layer of Vanessa’s personality and journey. As a result, Emma created a colorful, layered art piece that brought to life the impact of SM. The base is Vanessa’s favorite color, while the next layers are representations of chaos and peace—the latter of which Vanessa expressed she was able to achieve by voicing her own story and allowing herself to prioritize her own needs.
“The piece Vanessa inspired is titled ‘Look Deeper’ and is meant to be as multi-faceted as she is,” Emma describes. “SM is part of her journey, but it does not define her.”
A Message to Others Living with SM
For Vanessa, participating in the Colors of SM program illustrated the profound power of telling her story.
“For me personally, being able to share my experiences helped me better communicate what I am going through and what I need to my family, friends and others,” Vanessa reflects. “For the community, I hope Colors of SM helps raise awareness of the disease, which will not only allow more people to find answers, but increase understanding and empower others to speak up.”
Colors of SM: Apply to Participate
Applications for the 2026 Colors of SM program are now open. If you’re living with or caring for someone with SM and interested in participating, visit ColorsofSM.com to learn more.
This program is subject to certain eligibility criteria. To be considered, you must be a U.S. resident aged 18 or older. There is no cost to participate.
This content was developed by Blueprint Medicines, a Sanofi company. Vanessa was compensated by Blueprint Medicines for sharing her story.
Blueprint Medicines and associated logo are trademarks of Blueprint Medicines Corporation.
© 2026 Blueprint Medicines Corporation
USNON26.0008.1 | 03/2026