“I’m fine, until I’m not.”
Julie Leish, 45, lives in the USA and has indolent systemic mastocytosis. Unlike those who experience a sudden or dramatic onset of symptoms, Julie’s journey began with a series of small changes that gradually became harder to ignore. From brain fog and unexplained skin spots to overwhelming fatigue and difficulty swallowing, it took years before she received answers. Her story highlights the uncertainty of living with a rare disease and the challenges that aren’t always visible to others.Unnoticeable. Unmistakable.
The small signs that something wasn't right
For Julie, there was no single moment when she realised something was wrong. Instead, symptoms appeared gradually over time.
She began experiencing what she called “lazy brain”, now recognised as brain fog, along with dark brown and purplish spots on her legs. Fatigue became a constant challenge, sometimes causing her to fall asleep at her desk or while spending time with friends.
Later, she developed difficulty swallowing, despite having no previous gastrointestinal problems.
When Julie visited a dermatologist about what she thought was sun damage, the doctor immediately recognised that the spots were something else, although she couldn’t identify the cause.
Eight years searching for answers
From the time Julie first raised concerns with her doctors, it took approximately eight years to receive an official diagnosis. Looking back, she believes she may have been experiencing symptoms for much longer without recognising them.
Receiving a diagnosis of systemic mastocytosis brought another period of uncertainty. Her haematologist-oncologist explained that he couldn’t determine the specific form of the disease and referred her to a specialist.
Julie waited nine months for that appointment. During that time, she knew she had systemic mastocytosis but didn’t know how serious her condition might be.
The uncertainty was frightening, and she feared the worst. Eventually, she learned that she had indolent systemic mastocytosis.
Looking well doesn’t always mean feeling well
Today, Julie describes the unpredictable nature of her condition through a simple statement: she’s fine until she’s not.
Even when her symptoms are affecting her, she may still appear perfectly healthy to those around her.
For Julie, understanding exactly what is happening in her body and why is an important part of living with mastocytosis.
Her experience is a reminder that the impact of mast cell disease isn’t always visible. Someone can look well on the outside while dealing with symptoms that others cannot see.
“Unmistakable for me is just knowing exactly what is happening to me and why.”
Every story matters. Share yours.
Like Julie, 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.
