What you may not see is that the symptom burden of systemic mastocytosis (SM), including the indolent subtype, can significantly disrupt patients’ lives^1,2

Indolent systemic mastocytosis (ISM) represents ~90% of SM cases,³ and the symptoms of ISM can impact patients’ work, social lives, and overall well-being^1,2

“I tend to isolate when I have more symptoms. I stay in a lot, and it can feel depressing.”

Teri, a patient describing living with ISM

Watch the video to learn from Kristine and Sarah, 2 patients living with SM, about how ISM impacts their everyday lives

Indolent systemic mastocytosis (ISM) video thumbnail

These individuals receive compensation from Blueprint Medicines for sharing their experience living with systemic mastocytosis through the Blueprint Medicines SM Ambassador Program.

Patients with ISM reported reducing work hours and avoiding leaving their homes because of their symptoms^1,2*

To help understand the daily impact of symptoms on patients living with SM, Blueprint Medicines sponsored and developed a patient survey in collaboration with SM physician experts and SM patient advocates. 37 patients with ISM were surveyed, and among the 32 patients with moderate to severe ISM, the symptoms of ISM resulted in²*:

~56%

of patients reported

reducing their work hours

28%

of patients reported going on

medical disability

72%

of patients reported

avoiding leaving
their homes

A majority of patients with ISM have also reported feelings of depression, fatigue, and forgetfulness^4†

2 quality-of-life (QOL) surveys were conducted on a group of 164 patients living with ISM. These surveys examined various aspects of patients' lives, including the psychological, social, emotional, environmental, and cognitive impacts associated with ISM.^4†

Select each of the cards below to learn more about the aspects of patients’ lives affected by ISM

Symptoms may vary from person to person.

Despite taking multiple symptom-directed therapies, patients still have significant symptom burden²*

“I’ve taken many different medications, and found that my symptoms just weren’t resolved.”

Teri, a patient describing living with ISM

In the Blueprint Medicines–sponsored patient-reported survey, of patients with ISM (n=37)²*:

Indolent systemic mastocytosis (ISM) symptoms

Why your patients might not be telling you the whole story

“It’s all about the relationship and trusting each other—the doctor and patient—knowing that you are a team; otherwise, the patient may hold back.”

Kristine, a patient living with ISM

Patients may not share how they are truly feeling or may have adjusted to a life burdened by SM symptoms. Consider asking your patients these additional questions to get the full story^4,5:

What activities have you reduced or stopped doing because of ISM?

What adjustments have you made in your daily life to manage ISM?

Does ISM impact how you perform daily activities and work?

How is ISM affecting the lives of you and your family?

Some patients reported being hesitant about discussing their symptoms and only reporting symptoms if they are in significant distress⁶

In the Blueprint Medicines-sponsored patient-reported survey,
among the subset of patients with ISM (n=37)*:

Blueprint Medicine-sponsored patient-reported survey of patients with ISM

Discuss symptoms with their HCP only when they feel really bad

Feel they are burdening their HCP when discussing how they are feeling

*In the Blueprint Medicines-sponsored TouchStone SM Patient Survey, 56 US adults with a self-reported SM diagnosis completed a 100-item survey. An unpublished analysis of a subset of those patients with ISM (n=37), including 32 with moderate to severe ISM symptoms (defined as an ISM-SAF TSS ≥28), was conducted.
^†Data from a Dutch validation study of 2 patient-reported outcome measures of QOL and symptom burden in 164 patients with ISM. Patients completed a 49-item mastocytosis QOL questionnaire (MQLQ) asking patients to rate the burden of ISM symptoms on their daily life and the mastocytosis symptom assessment form (MSAF) asking patients to rate the severity of their ISM symptoms and the influence of fatigue on specific categories (eg, mood/temper, chores, happiness) over the past 24 hours.⁴

The symptoms of SM can be mistaken for other
conditions⁷

SEE HOW

What you may not see is that the symptom burden of systemic mastocytosis (SM), including the indolent subtype, can significantly disrupt patients’ lives1,2

What you may not see is that the symptom burden of systemic mastocytosis (SM), including the indolent subtype, can significantly disrupt patients’ lives^1,2