“I had to advocate for myself throughout the whole process, and I often felt dismissed.”
Unnoticeable. Unmistakable.
Seventeen years searching for answers
Ashleigh, 34, is an optometrist and mother of two young children living in Australia. She was diagnosed with indolent systemic mastocytosis at 33, following years of symptoms that began when she was just 16.
Her earliest symptom was chronic diarrhoea, initially diagnosed as irritable bowel syndrome. A few years later, she developed small, non-itchy spots on her legs that resembled mosquito bites.
After the birth of her son, Ashleigh began experiencing overwhelming fatigue. At first, she attributed it to the sleepless nights of having a newborn, but the exhaustion continued even when her son began sleeping through the night.
Following the birth of her daughter, her symptoms intensified, including dizziness, low blood pressure, night sweats, bone pain, heart palpitations, flushing and chronic rhinitis.
Despite seeking medical advice, Ashleigh struggled to find answers.
“As my symptoms worsened, tests kept coming back normal and I started to feel like maybe it was all in my head. I saw five doctors about the spots spreading over my body and was repeatedly told they were nothing.”
Eventually, Ashleigh requested a referral to a dermatologist. A skin biopsy revealed cutaneous mastocytosis, followed by a bone marrow biopsy that confirmed indolent systemic mastocytosis.
“I had to advocate for myself throughout the whole process, and I often felt dismissed.”
The hidden impact of everyday life
Today, Ashleigh continues to manage symptoms that affect her work, family life and everyday activities.
“Every day I experience fatigue that feels like it’s permanently 4am. I have brain fog, sometimes forgetting what I’m saying mid-sentence, and I frequently feel dizzy and light-headed.”
Even an ordinary day at work can leave her completely exhausted. Eating can also be unpredictable, with episodes of a racing heart prompting her to stop eating certain foods.
Activities that might seem relatively gentle can have a lasting impact. Ashleigh recalls trying Pilates because of her reduced bone density. Although the class felt easy, the aftermath was anything but.
“The class actually felt easy, but afterwards I developed intense fatigue and pain through my muscles, joints and bones that lasted about two weeks.”
She later recognised that similar episodes had occurred after spin classes, when she would feel exhausted for days without understanding why.
When seemingly unrelated symptoms are connected
For Ashleigh, greater awareness means recognising that mast cell disease can affect people in many different ways, often beyond what others might associate with an allergic condition.
“I wish people understood how many different ways mast cell disease can present. It isn’t just what people typically think of as allergies — for me it has meant fatigue, brain fog, dizziness, bone pain and many other symptoms.”
Her experience has also shaped what the campaign theme Unnoticed. Unmistakable. means to her.
“I also wish unexplained skin spots like mine weren’t dismissed.”
For Ashleigh, making mast cell disease unmistakable means healthcare professionals recognising when seemingly unrelated symptoms may be connected, listening to patients and investigating further when something doesn’t add up.
Her story highlights the importance of being heard, particularly when symptoms are difficult to explain and answers take years to find.
Unnoticed by most. Unmistakable to the person living it.
Every story matters. Share yours.
Like Ashleigh, 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.
