Systemic mastocytosis (SM) can have a multifaceted impact on patients’ health, relationships, and emotions, according to a study published in the European Journal of Oncology Nursing.

Through purposive sampling and semistructured interviews, the study identified 3 main categories of impacts that SM had on patients’ lives—the persistent presence of the disease, struggling against ignorance, and an illness or wellness perspective.

SM was found to have a persistent impact on the patients’ lives either through symptoms or side effects of medications. Symptoms such as fatigue, rashes, fainting, and abdominal symptoms such as cramping, diarrhea, and constipation limited the activities that patients undertook. Balance issues, muscle and joint pain, and decreased libido were also mentioned by patients.

“This study provides new insights in the everyday life of people with systemic mastocytosis. The disease has a considerable and multifaceted impact, with daily efforts made to avoid triggers and manage symptoms and medication side effects,” the authors said.

Read more about SM complications.

While prescribed medications were found to be beneficial, they also had adverse impacts on the patients’ lives. Lifelong treatment was found to be time-consuming for patients, causing them to miss out on events and take time off from work. Patients described treatment with interferons as causing flu-like symptoms and tyrosine kinase inhibitors causing muscle and joint pain along with stiffness.

The lack of knowledge about SM among healthcare professionals and the general public was also a struggle for patients. They found they had to involuntarily become experts about the disease themselves to advocate for their diagnosis and treatment.

Concerns about a lack of healthcare professional knowledge were particularly expressed by the group of patients in the study with advanced SM, compared to those with indolent SM. The disease also brought unwanted attention and questions by the general public, leading to embarrassment and psychological stress.

The patients also described emotional strategies and struggles with alternating feelings of vulnerability and acceptance. Many patients felt worried, vulnerable, and alienated due to the disease. Worry about worsening of the disease as well as feelings of hopelessness and anger were also present in many of the patients interviewed.

A number of patient coping strategies were detailed in the study as well, including comparing themselves to others they believed suffered from worse disease, spending time in nature, participating in religion, and having a life philosophy involving concepts such as karma and coincidence. Some found support in family members or other patients affected by SM but some patients preferred to keep their privacy.

The study included information from 16 patients including 9 patients with indolent SM and 7 with advanced SM. The responses collected were categorized using content analysis.


Levedahl KH, Nilsson A, Ungerstedt J, Hedström M. Living with systemic mastocytosis: balancing between vulnerability and resilience: a qualitative study. Eur J Oncol Nurs. 2022;(102172):102172. doi:10.1016/j.ejon.2022.102172