Woman gets rash on her feet then finds something is 'seriously wrong'

A young woman of 23, diagnosed with a rare condition that triggers arthritis, fatigue and breathlessness, has issued a heartfelt plea to others to 'appreciate life' as 'you never really know what tomorrow can bring'. Tia Rey, from Liverpool, had always considered herself healthy, despite enduring pains throughout her younger years.

But it was only when she spotted a rash creeping up from her feet, coupled with swollen fingers and stiff joints, last year, that she realised something was 'seriously wrong' and sought medical advice. At one point, Tia's symptoms were so debilitating that she couldn't even raise her arms high enough to get dressed, relying on her partner, with whom she shares a home, for assistance.

Following numerous blood tests and the expertise of a rheumatology specialist, Tia was diagnosed with a rare autoimmune disorder known as antisynthetase syndrome, which brings about painful symptoms such as muscle inflammation and arthritis.

Now, Tia struggles with tasks like walking or standing for long stretches, her knees often seize up, and she's left gasping for air after tackling a flight of stairs. While the exact trigger for her condition remains unknown, she suspects stress may have played a significant part.

Once in denial and uncertain about her future, Tia has made strides towards accepting her circumstances and keeping a 'positive outlook', holding onto the belief that 'things could always be worse'.

"I've always had a plan for my life, whether that's in my career or wanting to have children someday, but now it's all really uncertain and I don't really know what to expect," Tia told PA Real Life. "One thing that has got me through this is learning to appreciate everything around me.

"I appreciate life so much more now because you never really know what tomorrow can bring." Only in June last year did Tia become concerned enough to seek medical advice after noticing a rash spreading from her feet and ankles to other areas of her body.

She recounted how she was initially sent home with various creams and ointments, but when they failed to clear up the issue, she was put on the waiting list for a dermatology consultation. In the meantime, Tia shared that she was in the midst of moving into a new flat with her partner in November 2024, and during the move, a sofa dropped onto her hand.

Convinced she'd broken or fractured a finger, Tia later pointed out the swelling to her boss, who was puzzled as to which finger she meant. "I was showing him how swollen my finger was, and he said, 'Which finger?'" she said.

"It was then I noticed all my fingers were swollen on both hands, not just the one I injured." Tia went to the doctor for the injury, but also noticed around this time that her joints were becoming stiff and sore.

"I didn't really know what was going on, but it got to the point where I couldn't put my arms over my head, and my partner was having to dress me before work," Tia continued. "It was getting worse every day, and it got to the point where I was genuinely in tears trying to get ready."

The 23 year old sought medical advice, and a blood test revealed her ALT levels – an indicator of liver function – were higher than usual. In January this year, she found herself at the hospital for an urgent consultation with a rheumatology expert.

After a series of tests and assessments, Tia received a diagnosis of antisynthetase syndrome, a rare autoimmune disorder characterised by an overactive immune system, as per NHS information.

"I had no clue what it was, so I called my mum and told her before either of us had looked it up online," Tia said. "She hung up, searched it and called me back in tears – which is when I realised something was really wrong with me."

According to the NHS, antisynthetase syndrome can cause many symptoms, including inflammatory arthritis and mechanic's fingers or hands, where the skin on the sides of the fingers becomes dry and cracked. Tia suffers from various symptoms of the condition, such as fatigue, muscle inflammation, problems with her mobility, and diastolic dysfunction - a condition that impacts her heart.

"Walking or standing for certain periods of time, my ankles are in agony," she said. "I have good and bad days with my knees, but they can lock on me or just feel in pain."

Another symptom connected to the condition is interstitial lung disease (ILD), causing lung inflammation or irreversible scarring, according to the NHS, which Tia also has. She continued: "It's only mild at the moment, but I'm very breathless with it – even when walking up a flight of stairs."

"...I was in denial at first, I was just trying to get on as if things were normal, but I couldn't. It started to hit me that I'm not the same anymore and there are things I can no longer do.

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"I'm very close with my cousins and growing up, I used to play with them all the time, but I can't do it anymore, it's horrible. It all started to take a toll on me and I didn't realise, but I started to go through a bit of a breakdown."

She later added: "At the time things started, I was working three jobs – I always feel like I deal with stress very well, but obviously it was taking a toll on my body."

To manage her symptoms, Tia now relies on various medications, including steroids. She mentioned that her consultant has recommended starting rituximab infusions via an IV drip, a treatment aimed at reducing immune system activity, according to the NHS.

Tia is currently in limbo, awaiting confirmation on whether she can receive treatment through the NHS, as she highlighted the hefty price tag of £10,000 for private treatment.

In response, Tia has set up a GoFundMe page to offset some of the costs. She has pledged to refund any contributions if she secures NHS treatment without charge.

However, Tia stressed that her primary goal with the fundraising effort is to increase awareness about her condition and to establish connections with others affected and medical experts.

Looking ahead, Tia said she is taking 'every day as it comes'. "I'm trying to accept the reality of the situation, and I've got to keep a positive outlook," she said.

"At the end of the day, I'm still here, and it could be worse – things could always be worse."

To find out more, visit Tia's GoFundMe page here: gofundme.com/f/Living-with-ASyS"