A 23-year-old diagnosed with a rare condition that causes arthritis, fatigue and shortness of breath once had such bad symptoms she could not lift her arms over her head to dress herself.
Liverpool woman Tia Rey describes herself as having “always been healthy”, although she experienced body pains throughout her childhood.
However, in 2024, the customer care adviser for a leisure centre noticed a rash spreading from her feet, swelling in her fingers and stiffness in her joints.
Convinced something was “seriously wrong”, she sought medical help.
After numerous blood tests and support from a rheumatology specialist, Ms Rey was diagnosed with antisynthetase syndrome, a rare autoimmune disorder causing painful muscle inflammation and arthritis.
She now struggles to walk or stand for long periods, her knees often “lock up”, and she becomes breathless after climbing a flight of stairs.
“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,” she said.
“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.”
Antisynthetase syndrome is a rare autoimmune condition caused by the immune system being overactive, according to the NHS.
It can bring a host of symptoms, including inflammatory arthritis and mechanic’s fingers or hands, where the skin on the sides of the fingers becomes dry and cracked.
Ms Rey’s symptoms include such as fatigue, muscle inflammation, problems with her mobility and diastolic dysfunction – a condition impacting 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), which causes lung inflammation or irreversible scarring.
“It’s only mild at the moment, but I’m very breathless with it – even when walking up a flight of stairs,” Ms Rey said.
She now uses a mixture of medications to manage her symptoms, including steroids.
She said her consultant has also suggested starting rituximab infusions though an IV drip.
The medicine is used to reduce the activity of the immune system, according to the NHS.
Ms Rey said she is currently waiting to see if she can have the treatment via the NHS as she said it is expensive – with one course costing around £10,000 if sought privately.
She has launched a GoFundMe page with the aim of covering some of the fee, but said any donations will be refunded if she can receive it without the need to pay.
Ms Rey said she is now 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.”
