Lara’s so young she doesn’t know life without arthritis
1,000 children in the UK are diagnosed with juvenile idiopathic arthritis each year. Elizabeth Archer hears hears how one mum and dad have helped their daughter adapt after diagnosis
As five-year-old Lara Hutchings dances gleefully around the kitchen, it seems like she doesn’t have a care in the world. But Lara has already been through experiences most adults would find hard to bear.
When she was a toddler, Lara was diagnosed with arthritis, which made walking difficult.
She then developed the sight-threatening condition uveitis.
Lara’s had countless procedures under general anaesthetic, including having the lens removed from her right eye due to swelling.
She also has to have weekly injections at home for her arthritis.
But now her condition is under control, Lara is throwing herself into dancing, gymnastics and swimming clubs, and she loves colouring, reading and writing.
“She’s such a happy little girl, you’d never know what she’s been through as she’s so brave,” says her mum, Sapna, 34, a teacher from Luton.
Lara first got ill on holiday in Cornwall aged two, with her mum, dad Tom, 34, a marketing manager, and little sister Reeva, who is now three.
“She had a swollen knee and we thought she’d fallen over or she had an insect bite,” says Sapna.
“We took her to the doctors and they sent us away with some ibuprofen. But her knee got so bad she couldn’t walk, she was crawling and was in so much pain.
“We came home and went to see our own GP, who sent us to the hospital as he suspected she had sepsis.”
At Luton & Dunstable Hospital, sepsis was ruled out, but Lara saw a rheumatology consultant who diagnosed juvenile idiopathic arthritis.
Like arthritis in adults, the condition often starts with the swelling of joints, as well as pain and stiffness in the affected area.
Although it’s not known what triggered the condition, arthritis is an autoimmune disease, which causes the body to attack itself. Around 15,000 children in the UK have it, with 1,000 youngsters newly diagnosed each year.
“It was a huge shock for us as parents as we didn’t even know children could get arthritis,” says Sapna.
“We had no idea what the future would look like for Lara.”
A few weeks later, Lara was put under general anaesthetic and given steroid injections in her knee and elbow, which had also become inflamed.
She’s since had two further steroid injections under general anaesthetic, but while the injections helped in the short term, the effects wore off.
Then in 2019, Lara started having weekly injections of methotrexate
– an anti-inflammatory drug that suppresses the immune system to prevent it from attacking the joints. The treatment brought her arthritis under control and since then she hasn’t needed further steroid injections.
“It’s brilliant,” says Sapna.
But although the drug is helping, there can be side effects from taking immunosuppressant medication long term. “There’s no talk at the moment of coming off the medication because it’s working. “But there are other things that could come with it, like a higher chance of developing irritable bowel syndrome or behavioural problems. Ideally we don’t want her to be on it long term.” The pandemic was a particular worry for the family.
Sapna says: “If a child got a cold or flu or chickenpox, it could be dangerous for Lara as her immune system is suppressed. We all shielded in lockdown as Covid would have been serious for her.”
Despite the daily challenges, Lara remains upbeat and her parents work hard to make the process easier for her. Sapna will often draw a “tattoo” of a balloon or a heart on the spot of the injection to help Lara prepare.
“Because Lara was so young when she started having the injections, she doesn’t remember what it was like before she had them,” explains Sapna.
“She used to think it was normal to have injections, but now she understands that they make her better and we have special children’s books we read to her to help explain it.” And Lara’s sister Reeva helps too. “When Lara is having her injections, we give Reeva a job like putting the plaster on or holding the cotton wool and she pretends to be the nurse.
“It helps her feel involved, they have a really lovely relationship.”
Lara’s uveitis – a related condition that causes the middle layer of the eye to swell, causing pain and blurred vision – is being treated at Moorfields Eye Hospital in North London.
The condition gave Lara cataracts and she had to have the lens in her right eye removed.
She can’t see from that eye – but soon she will begin wearing special contact lenses to restore her sight.
Lara enjoys getting to stay in a hotel the night before each appointment at Moorfields and her parents make sure there’s her favourite flavour ice cream waiting for her once treatment is finished.
“Lara has to sit under different machines and see different doctors, but we make it fun,” says Sapna.
“Nothing keeps Lara’s spirits down for long, and we make sure she gets treats or a new toy for being so good.”
Though Lara may face further eye operations and treatment for arthritis in the future, her parents are hopeful her current drug regime means she can continue enjoying physical activity like her friends.
Sapna says: “Lara takes everything in her stride and she’s so brave – it’s incredible to see.”
■■For information, support and to connect with others living with arthritis visit versusarthritis.org or call the charity’s helpline on 0800 5200 520
When she has an injection, we give her sister the job of putting on a plaster