She was tired all the time and had a temperature that wouldn't go away, then she couldn't walk

Sffiyah Khan with her dad
-Credit: (Image: Parvina Khan)

When SfiyahKhan's mum spotted raised bumps on her daughter's neck she was reassured to hear that it was likely caused by a virus and in time it would go away on its own. A virus would also explain the how tired and lethargic the then nine-year-old was at the time.

She first spotted the symptoms in January 2022 but by March Sfiyahwas still not fully herself and she was prescribed antibiotics to fight a suspected infection. "She had a constant sore throat and they thought it was glandular fever at one point," Sfiyah's mum, Parvina Khan, said.

Eventually, after a few appointments with a nurse practitioner, Sffiyah had an appointment with a GP who immediately referred her to paediatrics. He also gave her another course of antibiotics as he wanted to ease her symptoms.

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Parvina, from Newport, said: "He followed up a week after Sfiyah started taking the antibiotics and noticed that the nodules had increased. So he referred her for a blood test and sped up the paeds appointment.

"She had Covid in the March and she was quite poorly and it took her a long time to recover. So we thought: 'Is it long Covid?' but the symptoms had been going on since January so it wasn't that."

Then Sfiyah developed inflammation in her knee. Parvina and Sfiyah's dad did not question it at first. They put it down to a long sunny weekend of playing out the garden. However the inflammation grew to a point where Sffiyah could not walk.

She was taken to hospital and the A&E department told Parvina she needed to go to a fracture clinic. However at the fracture clinic the family were told there was no fracture and there was something further going on there.

Sffiyah with her mum Parvina and her two older brothers
Sffiyah with her mum Parvina and her two older brothers -Credit:Parvina Khan

They returned to A&E at the Grange Hospital and fortunately they saw a doctor who was able to look at all of Sfiyah's symptoms and that was the first time in months they got close to an answer for what was going on. The doctor said they suspected Sfiyah's symptoms were linked to a rheumatology condition. They were referred to see a specialist at the University Hospital of Wales where Sffiyah was officially given a diagnosis of juvenile ideopathic arthritis (JIA) eight months after the onset of her symptoms.

Parvina and her husband were shocked by the diagnosis as they had no idea children could be affected by arthritis. "We were told to prepare Sfiyah that day to have two big injections in her joint to ease the symptoms and the pain that she was in."

Now Sfiyah is on a maintenance treatment to ease the symptoms but she will always live with the condition and unfortunately experiences painful flare-ups from time to time. "It is trying to find a happy balance of how she can be a normal child," Parvina explained, as Sfiyah has to be careful not to over-exert herself and has to avoid playing contact sport.

Sfiyah is looking forward to starting secondary school this September, shortly after marking two years since her diagnosis, and at first told her mum she did not want people to know about her condition. "But she said: 'Actually people will find out very soon because I need to have pain relief and there are some things I can't do'. It's difficult, because obviously she can't hide the fact that sometimes she has swelling on her knees or her hands are hurting.

"Sfiyah said she needs to stop thinking that her JIA is her enemy and she needs to learn to live with it as her friend." For the latest health and Covid news sign up to our newsletter here.

Sfiyah is now on long-term treatment to control the inflammation. She also takes daily painkillers. There is a possibility it could go into remission as Sfiyah gets older. Parvina is sharing Sfiyah's story in the hope it will raise more awareness of the condition and help other children who are potentially suffering to get a diagnosis sooner.

According to the charity Versus Arthritis JIA usually occurs before a person turns 16. It is slightly more common in girls. The symptoms include:

  • painful, swollen, or stiff joint(s)

  • joint(s) that are warm to touch

  • increased tiredness

  • a fever that keeps returning

  • a limp but no injury

Mary Cowern, head of Wales at Cymru Versus Arthritis said: “Juvenile Arthritis (JIA) is an autoimmune condition affecting an estimated 10,000 children and young people under 16 years old in the UK. Receiving an early diagnosis is crucial, as any delay can lead to long-term joint damage and greatly affect mental health.

“Children and young people can face a lack of understanding and empathy, as well as stigma. Many describe dealing with scepticism and are often dismissed, being told it’s just a bit of joint pain. The isolation of living with a long-term health condition like arthritis is often not recognised, particularly the impact it can have on young individuals.

“Versus Arthritis works to reduce this isolation through support services that brings young people with arthritis together, sharing experiences and learning they are not alone. We offer access to events, self-support tools and promote physical activity that helps young people to manage their condition and live well, whilst offering support to those waiting for care and treatment.”

If you need support, please contact the Wales office on 0800 756 3970, the Helpline on 0800 5200 520, email or visit the online forum.