Patient history:

“For the last five years, I’ve been dealing with on-and-off rashes, mostly on my body and limbs, along with flushing, itching and spots.”

• Recently, Emily’s symptoms escalated, including severe abdominal pain and episodes of dizziness, especially after meals
• H1 antihistamines were initiated, which provided relief but were not enough to resolve her episodes of flushing, itching, spots and abdominal pain

• Emily’s allergist suspected a mast cell disorder based on elevated serum tryptase and her symptoms. A haematologist confirmed a diagnosis of indolent systemic mastocytosis with a positive KIT D816V mutation, and the presence of <10% mast cell infiltration and positive CD117 and CD25 on bone marrow biopsy, with ongoing management directed by her allergist

Burden of ISM:

Living with ISM means Emily has to constantly juggle her career and her health. Despite carefully planning her meals and activities to avoid triggers, sudden symptoms often cause her to miss work.

“After all these years, I can’t usually tell when my symptoms are about to hit. Even though I have talked to my colleagues and students about my condition, the constant worry about an unexpected flare-up leaves me feeling incredibly anxious and uncomfortable…”

Treatment with AYVAKYT:

• Emily begins taking AYVAKYT 25 mg orally, once daily in addition to her other medications (H1 antihistamines)¹
• At a follow-up appointment at 24 weeks, she reports that she is tolerating AYVAKYT well¹
• Emily experiences reductions in spots, flushing and itching episodes, and improvement to her abdominal pain. She also reports the severity of her itching has reduced¹

Patient history:

“For about two years, I’ve had ongoing diarrhoea that just wouldn’t go away – sometimes it even woke me up at night. I’d also get episodes of flushing for no clear reason.”

• In the past year, Anne developed abdominal pain, nausea and vomiting, and constant fatigue
• Her initial treatment included H2 antihistamines and proton pump inhibitors, which alleviated some of her symptoms but she felt they were not enough

• After extensive testing by a gastroenterologist proved inconclusive for other causes, blood work revealed elevated tryptase, and Anne was referred to a haematologist. Diagnosis of indolent systemic mastocytosis was confirmed based on the presence of spindle-shaped mast cell aggregates (>25%) in bone marrow biopsy

Burden of ISM:

Despite Anne’s efforts to follow strict dietary rules, she often avoids social events out of fear of bowel incontinence accidents and is reluctant to discuss her condition.

“Dealing with gastrointestinal issues is a daily battle. Some days I use the bathroom multiple times before work, and constantly worry about finding a toilet when I’m out. It’s frustrating not having control over my own body…”

Treatment with AYVAKYT:

• Anne begins taking AYVAKYT 25 mg orally, once daily in addition to her other medications (H2 antihistamines and proton pump inhibitors)¹
• At 24 weeks, she reports having experienced mild peripheral oedema, but it resolved without medical intervention or treatment interruption after one week, and generally she has been tolerating AYVAKYT well¹
• Anne reports improvement in her gastrointestinal symptoms, and reductions in flushing and fatigue. The episodes of diarrhoea, abdominal pain and nausea have lessened¹

Patient history:

“I’ve had these vague symptoms for as long as I can remember – headaches, feeling light-headed, brain fog, and being tired all the time.”

• More recently, John has also developed chronic lower back pain

• He was prescribed sodium cromolyn and a proton pump inhibitor, which provided relief from his symptoms but did not help with his back pain
• John consulted an orthopaedist and underwent imaging examinations. After further re-evaluation, He was referred to a haematologist. Diagnosis of indolent systemic mastocytosis was confirmed based on a positive KIT D816V mutation and presence of spindle-shaped mast cell aggregates (>25%) in bone marrow biopsy

Burden of ISM:

John often cancels plans to spend time with his family due to his severe fatigue.

“I want to be there for my family, but some days I barely get out of bed as I feel exhausted before the day even begins. The bone pain is relentless, and the headache weighs me down like a heavy blanket. It is frustrating to feel my mind slipping too…”

Treatment with AYVAKYT:

• John begins taking AYVAKYT 25 mg orally, once daily in addition to his other medications (sodium cromolyn and proton pump inhibitors)¹
• At 24 weeks, John reports that his brain fog lessened, and the episodes of headache, dizziness and fatigue have decreased. His lower back pain has also improved and he is tolerating AYVAKYT well¹