Lynsey and Mia’s story with juvenile idiopathic arthritis15 October 2020
When Lynsey’s daughter Mia was diagnosed with the same condition she has, polyarticular juvenile idiopathic arthritis (JIA), she became determined to raise awareness. She wants to make sure Mia gets the support she needs to achieve her dreams, and to help other parents who have children with arthritis.
I was an unhappy child, I was always crying, and my parents didn’t know why. I started to crawl on my elbows and didn’t start walking until I was nearly two. When I did start walking, I was like a tin soldier with straight legs.
Mum knew something was wrong and took me to the GP at 18 months old but was sent away. Eventually I was referred to the paediatrician at Basildon hospital. The GP had sent a letter and said tey thought mum was a 'neurotic mother'. I was diagnosed with polyarticular JIA at 18 months old.
It was similar for my daughter Mia. She was late hitting her milestones - but never cried. She was a happy baby. She started to crawl on her elbows while mum was babysitting. I thought 'ok, this might be a new thing she is discovering.'
She had previously started to pull herself up on furniture; when she stopped doing that completely, I had a feeling something wasn’t right. I took her to the GP who said to take her to A&E straight away.
“We knew there was something very wrong when she wouldn’t reach out for toys”
We were given a diagnosis of irritable hip syndrome which I disagreed with; they said she’d be better in weeks. But she was still in pain especially when we dressed her.
By the 22 December 2019 she’d deteriorated and wasn’t even rolling over. We knew there was something very wrong when she wouldn’t reach out for toys and we took her back to A&E.
When Mia was visited by the paediatric rheumatologist and the physio team, I knew what they were going to say and started crying. She was diagnosed with polyarticular JIA and has it everywhere apart from her hips and back.
We’re both rheumatoid factor negative and anti-nuclear antibodies positive – the same diagnosis. Basildon hospital and Addenbrookes hospital have been amazingly supportive. Her specialists and her physiotherapy team are incredible.
“I used to cry after every time I injected Mia, but she’s a little warrior”
After Mia came off steroids, she had another flare up and stopped moving again. I contacted the rheumatology nurse, and she was seen less than a week later.
Mia has her own rewards jar where she puts a pom pom in the jar every time she has an injection or blood test. I used to cry after I injected Mia, but she is a little warrior and hardly makes a fuss. In fact, she makes more fuss when I put her hair into pigtails!
“When Mia was diagnosed, it was upsetting for me because I know what she will have to face”
Unless you have arthritis, you don’t understand the pain, stiffness and fatigue on top of everyday stresses. We are lucky to have a husband and daddy in our lives who might not always understand, but always supports us.
“When you’re 19, you don’t have the confidence to challenge someone who knows more than you do”
I wanted to be a dancer when I was younger however, having JIA made this difficult. I still danced but not at the level I wanted. Since the age of five I haven’t been able to fully straighten my left elbow, which is a problem if you want to be a dancer.
When I explained to the GP that my elbow was stiff and painful, he sent me away and said I was fine. When you’re 19, you don’t have the confidence to challenge someone who knows more than you do so if the doctor says you’re fine you believe it.
“No-one else knows your child better than you do”
My biggest tip for parents is that you know your child better than anyone else. If you think you have been given the wrong diagnosis, you don’t have to accept this. You are entitled to disagree, go back to your GP and question the diagnosis.
To parents who get turned away or aren’t happy with a diagnosis - don’t be scared to ask any questions because it’s your right, and part of their job to answer them.
GP and Specialists are only human, they can still get things wrong. Sometimes you just get a gut feeling which you need to listen to.
“I used to want to hide the fact that I have JIA but why should it be hidden?”
Even though more people are discovering that young people get arthritis, I still don’t think there is enough awareness about it, which is why I try to raise as much awareness as possible.
How can people support you if they don’t know what to support? Also, what kind of message would that give my daughter?
“I want Mia to know that just because she has arthritis, it shouldn’t hold her back from anything”
I want Mia to realise that she can do anything she wants to do – she might just have to do things a bit differently or work a bit harder.
Whenever I’ve had a bad day I think of this quote, “And fate whispered to the warrior, you cannot withstand the storm and the warrior whispered back, I am the storm.”
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