A 23 -year -old girl diagnosed with a rare condition that causes arthritis, fatigue and lack of breath once she had such bad symptoms that she could not lift her arms over her head to dress.
Liverpool's woman, Aunt Rey, describes herself as “is always healthy,” although he experienced body pains throughout her childhood.
However, in 2024, the customer service advisor for an leisure center noticed an eruption that extended from his feet, swelling in his fingers and stiffness in his joints.
Convinced that something was “very bad”, she looked for medical help.
After numerous blood tests and the support of a rheumatology specialist, Mrs. Rey was diagnosed with antisintetase syndrome, a rare autoimmune disorder that caused painful muscle inflammation and arthritis.
Now struggle to walk or rest for long periods, their knees are often “blocked”, and stays out of breath after climbing a stretch of stairs.
“I have always had a plan for my life, whether in my career or who wants to have children one day, but now everything is really uncertain and I really don't know what to expect,” he said.
“One thing that has overcome this is to learn to appreciate everything around me.
“I appreciate life much more because you never really know what tomorrow can bring.”
According to NHS, antisintetase syndrome is a rare autoimmune condition caused by the immune system, according to NHS.
It can bring a lot of symptoms, including inflammatory arthritis and fingers or mechanical hands, where the skin on the sides of the fingers dries and cracks.
The symptoms of Mrs. Rey include as fatigue, muscle inflammation, problems with her mobility and diastolic dysfunction, a condition that affects her heart.
“Walking or standing for certain periods of time, my ankles are in agony,” he said.
“I have good and bad days with my knees, but they can lock myself or simply feel pain.”
Another symptom related to condition is interstitial pulmonary disease (ILD), which causes pulmonary inflammation or irreversible scars.
“It's only soft at this time, but I am very breath with that, even when a stretch of stairs goes up,” said Rey.
Now use a mixture of medications to control your symptoms, including steroids.
She said her consultant also suggested to initiate rituximab infusions through an intravenous drip.
The medicine is used to reduce the activity of the immune system, according to the NHS.
Mrs. Rey said she is currently waiting to see if she can receive treatment through the NHS, since she said it is expensive, with a course that costs about £ 10,000 if you are sought privately.
She has launched a Gofundme page with the aim of covering part of the rate, but said that any donation will be reimbursed if you can receive it without the need to pay.
Mrs. Rey said she is now taking “every day as it comes.”
“I am trying to accept the reality of the situation, and I have to maintain a positive perspective,” he said.
“At the end of the day, I'm still here and it could be worse, things could always be worse.”
