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<\/p>\nTia Rey can’t remember a time when she wasn’t feeling achey, but she’ll never forget the day she was told that the painful twinges were a sign that she was living with a rare and incurable autoimmune disease.\u00a0<\/p>\n
Ms Rey, 23, was told that she has anti-synthetase syndrome (ASS) in January this year, a condition which\u00a0causes painful symptoms such as muscle inflammation,\u00a0arthritis, fatigue and shortness of breath.<\/p>\n
Last June, the customer care adviser, from Liverpool, noticed a rash spreading from her feet, swelling in her fingers and stiffness in her joints, leaving her concerned that something was ‘seriously wrong’ and it was time to seek medical help.\u00a0<\/p>\n
Her GP sent her home with different creams but ‘nothing was working’, so she was referred for a dermatology appointment.<\/p>\n
In November 2024, while waiting for a slot with a dermatologist, Ms Rey hurt her hand while moving a sofa into the flat she shares with her partner.\u00a0<\/p>\n
Feeling as though she had broken or fractured a finger, Ms Rey showed her boss at the leisure centre where she works her injury\u2014but he noticed all her fingers were swollen.<\/p>\n
She said: ‘I was showing him how swollen my finger was, and he said, “which finger?”<\/p>\n
‘It was then I noticed all my fingers were swollen on both hands, not just the one I injured.’<\/p>\n
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Tia Rey, 23, has been diagnosed with an incurable autoimmune disease\u00a0<\/p>\n
She went to see her doctor about her injured finger, but also noticed around this time that her joints were becoming stiff and sore.<\/p>\n
‘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,’ she said.<\/p>\n
‘It was getting worse every day, and it got to the point where I was genuinely in tears trying to get ready.’<\/p>\n
Her doctor arranged a blood test, where it was found her ALT levels\u2014measuring her liver function\u2014were elevated above normal.<\/p>\n
She went to hospital in January this year where she was given an emergency appointment with a rheumatology specialist.<\/p>\n
Ms Rey was diagnosed with ASS, which is so rare it’s estimated that there are one to nine cases per 100,000 people worldwide.<\/p>\n
‘I had no clue what it was, so I called my mum and told her before either of us had looked it up online,’ Ms Rey said.<\/p>\n
‘She hung up, searched it and called me back in tears \u2013 which is when I realised something was really wrong with me.’<\/p>\n
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The leisure centre worker, from Liverpool, now faces an uncertain future\u00a0<\/p>\n
According to the NHS, ASS is caused by the immune system being overactive, and can bring a host of symptoms such as inflammatory arthritis and mechanic’s fingers or hands, where the skin on the sides of the fingers becomes dry and cracked.\u00a0<\/p>\n
Ms Rey suffers with a variety of symptoms with the condition, such as fatigue, muscle inflammation, problems with her mobility and diastolic dysfunction\u2014a condition impacting her heart.<\/p>\n
‘Walking or standing for certain periods of time, my ankles are in agony,’ she said.<\/p>\n
‘I have good and bad days with my knees, but they can lock on me or just feel in pain.’<\/p>\n
Another symptom connected to the condition is interstitial lung disease (ILD), causing lung inflammation or irreversible scarring, according to the NHS\u2014which Ms Rey also has.<\/p>\n
‘It’s only mild at the moment, but I’m very breathless with it\u2014even when walking up a flight of stairs,’ she said.<\/p>\n
Ms Rey struggles to walk or stand for long periods of time, her knees can often ‘lock up’ and she becomes breathless after going up a flight of stairs\u2014and while it is unknown what has triggered the condition, she feels stress has played a major part.\u00a0<\/p>\n
‘At the time things started, I was working three jobs\u2014I always feel like I deal with stress very well, but obviously it was taking a toll on my body.’<\/p>\n
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Ms Rey as a child\u00a0<\/p>\n
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She now relies on a smorgasbord of medication to get her through each day\u00a0<\/p>\n
Ms Rey said the condition has also impacted her mentally and emotionally.<\/p>\n
‘I was in denial at first, I was just trying to get on as if things were normal, but I couldn’t,’ she said.<\/p>\n
‘It started to hit me that I’m not the same anymore and there are things I can no longer do.<\/p>\n
‘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.<\/p>\n
‘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.’<\/p>\n
She added it is not known why the condition has been triggered at this stage in her life, but she feels stress plays a big part.<\/p>\n
Ms Rey now uses a mixture of medications to manage her symptoms, such as steroids.<\/p>\n
She said her consultant has also suggested starting rituximab infusions though an IV drip, a medicine used to reduce the activity of the immune system, according to the NHS.<\/p>\n
she\u00a0\u00a0<\/p>\n
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Her swollen hands were one of the symptoms she had the rare condition, ASS\u00a0<\/p>\n
She is currently waiting to see if she can have the treatment via the NHS as she said it is expensive\u2014with one course costing around \u00a310,000 if sought privately.<\/p>\n