“I was told I might have 18 months to live. That was 24 years ago.”
Diagnosed with aggressive systemic mastocytosis at 25, Kristin Sinclair was told she might have just 18 months to live. Twenty-four years later, she shares the challenges, losses and unexpected joys of living with a rare mast cell disease, and why she and her husband have chosen to live now rather than wait for later.
Unnoticeable. Unmistakable.
Kristin shares her story
“Looking back, there were signs throughout my childhood and teenage years, including unexplained allergic reactions and recurring illnesses, but I never had any answers.
When my mum died, I was 25. I was broken, emotionally and physically, and I thought that was what grief felt like. I was fainting, experiencing pain, gastrointestinal problems, allergic reactions and breathing difficulties. I developed asthma for the first time, and my neutrophil count dropped from normal to virtually nonexistent.
Ironically, that severe neutropenia led to a bone marrow biopsy, where a technician recognised the abnormal spindle-shaped mast cells from another patient they had seen years earlier. Within five months, I was diagnosed with aggressive systemic mastocytosis (ASM).
I was told I might have only 18 months to live.
Rebuilding my life
I was devastated. I’d just lost my mum, and suddenly I was facing the loss of my own future. My career, independence and the life I’d imagined seemed to disappear. I made the decision not to have children because of how ill I was and the uncertainty of my health in the future. For a long time, I wondered whether I’d ever find a partner who could see beyond my illness and would stand with me in my choices.
The first five years were incredibly difficult. I underwent challenging treatments, including cladribine, interferon and later a midostaurin clinical trial.
Alongside mastocytosis, I’ve continued to live with chronic neutropenia. Repeated serious lung infections resulted in frequent hospitalisations, sometimes in high-dependency wards, and I’ve lost more than 40% of my lung capacity.
Access to G-CSF for my neutropenia and sodium cromoglycate for my mast cell symptoms was life-changing, helping me achieve a level of stability I hadn’t thought possible.
I also had to change how I lived. Working in offices meant constant infections and hospitalisations, so I started my own business and began working from home. My world became smaller, with a tighter circle of friends and more control over my environment.
It wasn’t the life I’d planned, but it was a life I could live.
Choosing to live now
My husband and I both lost a parent at a young age, so we understand that life doesn’t always give you the time you expect. We also know how much mastocytosis continues to affect my life.
With that in mind, we’ve spent ten years saving for a dream: travelling around Australia.
We didn’t want to wait until retirement or some imagined future when everything might be easier. We wanted to enjoy life while we could.
And now we’re doing exactly that.
We’re travelling slowly around Australia in our caravan, making time to rest and manage my health while I continue running my business and working in patient advocacy from the road.
It takes planning, flexibility and compromise, but it’s worth it.
We’ve chosen to live now, rather than wait for later.
Making sure others don’t feel alone
One of the hardest parts of living with a rare disease is the isolation. The symptoms are difficult enough, but trying to explain an unpredictable, complicated and often invisible illness can be exhausting.
That need for connection was one of the reasons I co-founded TAMS. The Australasian MCAD Society. Today, I continue to volunteer as a Director/Vice Chair, and am Coordinator for International Mastocytosis and Mast Cell Diseases Awareness Day.
After more than two decades, I’ve learned that living with a serious chronic illness isn’t always about returning to the life you had before. Sometimes it’s about finding a different way to live.
Unnoticed. Unmistakable.
At 25 when diagnosed, I was told I might have only 18 months to live.
At 49, I’m travelling Australia with my husband, running my small business and advocating for people living with mast cell diseases around the world.
What people see today doesn’t tell the whole story. They don’t see the treatments, hospitalisations, lung damage leading to a diagnosis of COPD, grief or sacrifices that have shaped my life.
My life is smaller in some ways than the one I once imagined, but it’s also full of things I never thought I’d have.
You can build a meaningful, joyful life while still living with a serious illness. The challenges don’t disappear simply because someone looks well or appears to be enjoying themselves.
Unnoticed by most. Unmistakable to the person living it.
Every story matters. Share yours.
Like Kristin, 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.
