A mum has revealed her harrowing battle after what she thought was stress turned out to be a rare life-threatening disease – and it’s unclear how long she’s got left.
Kristina Hamilton had been going through a tough divorce, all while juggling raising three kids and working full-time.
So, when she began getting sores and rashes out of the blue, the 43-year-old simply put it down to stress.
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Soon, the mum started experiencing gut issues, coupled with joint pain and issues with swallowing.
While alarm bells were going off, it wasn’t until her fingers turned “ghostly white” that she knew something grave was going on.
“The invasion it was having on my body was relentless,” the stay-at-home mum told Need To Know.
“In medical terms, what I’ve got is a rare and chronic autoimmune disease.
“In my terms, it’s a glitch in the system.
“When my symptoms first started, I honestly thought it was stress and exhaustion.
“At the time, I was going through [so much].
“I just ignored it.
“And, I didn’t want to believe something serious was wrong.
“Even when my body started changing, and the pain became harder to ignore, I still tried to push through it because that’s what I’ve always done in life.
“But, deep down, I knew something didn’t feel right.”
Kristina, who lives in Florida, US, was diagnosed with diffuse systemic scleroderma in 2022.
It turns the body’s own defence mechanism into an aggressor, triggering an overproduction of collagen, which causes the skin to thicken and harden.
She said: “The clinical definition doesn’t come close to capturing the reality of living with it.
“I had no idea what the condition meant for me – until it started to steal my life.
“As things got worse, I became scared and confused.
“I remember looking down at my hands when they started to turn white and feeling confused because I had never seen anything like it before.
“I tried to convince myself it was poor circulation or maybe I was just cold.
“They didn’t feel like my own anymore.
“And then when my teeth started falling out, it was devastating.
“I felt like I was losing parts of myself piece by piece.
“Every time I looked in the mirror, I saw someone I didn’t recognise anymore.”
Kristina stopped smiling, taking pictures and even avoided looking at herself most days.
Her body is essentially attacking itself daily, mostly vital organs such the lungs, heart, kidneys and gastrointestinal system.
It’s reshaped her face – to the point where people don’t recognise her anymore – and has stiffened her joints into “stone”.
Everyday tasks, including buttoning up a shirt or tying a shoe, is no longer possible.
She said: “My hands, once capable of providing medical care to others, began curling into a claw-like position.
“They were frozen and painful.
“I’ve watched helplessly as my weight has dropped to the point where I look like a skeleton.
“Eating is less about hunger now, as I’m not hungry.
Kristina protecting her fingers. (Picture: Jam Press)
“When my appearance began to change, I noticed people reacting differently to me.
“Some stared without realising, while others looked away quickly because they didn’t know what to say.
“There were moments that hurt deeply; whispers, uncomfortable looks and even comments that made me feel self-conscious about changes I couldn’t control.
“I’ve had people assume I was contagious and speak about me with pity instead of understanding.
“It’s been painful, because behind the disease, I’m still the same person.
“I’m a mother, a wife, a friend and someone trying to live life fully.”
The exact cause is currently unknown, though it’s believed to be linked to a genetic issue that has been triggered to “wake up”.
These triggers can be stress, trauma or illness.
Almost overnight, life as she once knew it has been taken away.
She said: “I wonder if my condition had been lying dormant for years.
“I don’t think I was born sick – but I do believe something inside my immune system had been there quietly.
“There have been challenges with chronic fatigue, pain, mobility, daily tasks and adjusting to a body that sometimes feels unfamiliar to me.
“Beyond the physical changes, there has been anxiety and grief for the life and appearance I once knew.
“It’s made me feel isolated.
“And, and financially, it’s been overwhelming.
“Everything adds up quickly, especially as I can no longer work.”
Sadly, as there are only 100,000 cases globally, there’s little to no research and so there’s no cure.
Kristina said: “Learning this was incurable was one of the most devastating moments of my life.
“It felt like the ground beneath me disappeared.
“And then I was told it was life-threatening.
“It was the hardest reality to face.
“As it affects the vital organs, it’s unpredictable what damage it’s doing.
“I’ve had to confront fears I never imagined having at my age, such as leaving my children and husband too soon.
“Not being able to celebrate future moments with them was a worry.
“So was losing pieces of myself and becoming totally dependent on others.
“Worst of all, there’s no timeline – and that uncertainty is overwhelming.
“But instead of only focusing on what the disease was taking from me, I began to focus on what I still had.”
Kristina met her now husband, Chris, 44, just before her diagnosis.
While she wasn’t looking for love, he offered support at a time where she needed it most.
When her body began changing, he didn’t walk away – and helped Kristina to accept the unknown.
In May 2024, he popped the question, though they feared how long they had left to tie the knot.
In April 2025, they were joined by friends and family as they exchanged nuptials after Wish Upon a Wedding, a non-profit, granted them the funds.
The charity works by granting this wish to those with terminal illnesses.
Their mission touched Kristina, so she reached out.
She said: “At that point in my life, I was carrying so much uncertainty.
“But they turned what could have been a really stressful time into one of the most beautiful and unforgettable moments of my life.
“I felt seen, valued and deserving of joy.
“And for one day, it wasn’t about my illness – it was about love.”
Now, as it’s unclear how long Kristina has left, she’s looking toward the future with gratitude and hope.
She added: “While we may not know exactly what tomorrow holds, we do know we want to face it together, one day at a time.
“As a mum, I feared one of my children one day facing this reality.
“But it’s not something that can be passed on – and it’s not contagious.
“I’m managing day-by-day.
“Along with daily medications and four monthly infusions, it’s hoped that progression is slowing down.
“I’m listening to my body more, giving myself grace and focusing on what truly matters.
“What once filled me with shame has become my platform for connection.
“I don’t hide my scars anymore; they’re proof of my survival.
“Healing isn’t a straight line – it’s messy, layered and exhausting.
“As long as I am breathing, I’m still healing.
“And, most of all, I’m still standing.”
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