“I have been living with a mast cell disease since I was four years old.”
For Filomena Pereira, the first signs of mast cell disease appeared during childhood, when unexplained red marks developed across her skin. Over the years, she experienced a growing range of symptoms that affected her health, education and everyday life.
Although her skin condition was recognised early, it would be decades before further investigations confirmed a diagnosis of systemic mastocytosis.
Unnoticeable. Unmistakable.
The first signs in childhood
Filomena’s first noticeable symptoms appeared around the age of four, following a hot summer day spent in the countryside. Red marks appeared across her body and, rather than disappearing, gradually turned brown.
Her mother recognised that something wasn’t right.
As Filomena grew older, other symptoms emerged. She experienced joint pain, almost daily flushing triggered by heat, physical activity and certain foods, along with frequent headaches.
By the age of eight, she was experiencing recurring episodes of swelling around her eyes, which were uncomfortable, debilitating and accompanied by significant fatigue.
During adolescence, gastrointestinal symptoms developed, including stomach pain, reflux, abdominal bloating and changes in bowel habits.
Decades of symptoms and searching for answers
Around a year after the first skin marks appeared, an experienced dermatologist recognised the condition by examining her skin, without the need for a biopsy.
However, Filomena continued to experience symptoms for decades. It wasn’t until approximately ten years ago that a bone marrow investigation confirmed a diagnosis of systemic mastocytosis.
Throughout her childhood and adolescence, Filomena often felt different from other young people who didn’t experience the same unexplained symptoms.
Years of searching for answers left her feeling isolated and uncertain about her health.
The impact of living with mastocytosis
For Filomena, recurring episodes of swelling around her eyes were particularly difficult. They became more frequent and severe, sometimes appearing without an obvious trigger, despite medication.
The physical symptoms and uncertainty were exhausting. Her condition also affected her education and later her working life, leading to absences from school and work.
Filomena’s story highlights the importance of recognising the impact of mast cell disease on everyday life.
Her message is that when a disease is recognised, its symptoms and the impact they have on a person’s life should not be ignored, dismissed or mistaken for something else.
Every story matters. Share yours.
Like Filomena, many people living with mastocytosis, MCAS and other mast cell diseases face challenges that others may not see or understand.
By sharing your experience, you can help raise awareness, build understanding and remind others that they are not alone.
Your story deserves to be heard.
