Helena and Amelie
- Location Doncaster
- Type of Arthritis Polyarthritis
- Age at Diagnosis Four
My daughter Amelie has polyarthritis. We think she’s had it since birth, but she got a diagnosis at the age of four. She didn’t sit until she was about 18 months old, she couldn’t hold her head up, and didn’t walk until she was nearly three. She just cried; she was a very unhappy little girl.
We were under the hospital’s care anyway, as Amelie was premature and had been diagnosed with hypermobility syndrome, but then she didn’t start to walk, as she was in so much pain. She was getting temperatures and her knees were swollen. We went to the hospital. We pleaded with the doctor for a second opinion, so we were referred to Sheffield Children’s Hospital and it was picked up within a month or so. She had blood tests and ultrasound scans, and that’s when we found out that she had arthritis.
We felt devastated. We still are. I think we were relieved in some ways, because we knew something was wrong, but we didn’t know what. That was a bit of a relief, but the diagnosis was still absolutely devastating. It’s hard to find words to describe it; it’s awful.
Arthritis does run in my family. My sister’s got rheumatoid arthritis in her 40s and my mum has osteoarthritis. I think at that kind of milestone you expect things to go wrong, but not at such an early age. It was a really big shock.
Life has changed in a big way. She goes to a smaller school now, as she finds it difficult to cope with large groups of children. She gets panicky that she’s going to get hurt or fall over. The medicines have changed things a lot. She’s on methotrexate and adalimumab so infections are a big part of her life. We have to be very careful - she can’t go near people with chickenpox, for instance and we have to be careful with illnesses such as scarlet fever and mumps.
Life’s changed dramatically. We now take a wheelchair out with us, and we have to plan where to go, so she’s not walking long distances and doesn’t get cold.
She has to have help dressing and undressing on a bad day or when she is having a flare. On a good day she copes really well but is very slow. Writing is also a struggle. Amelie is very intelligent; she’s about two years ahead educationally, but two years behind in terms of motor skills. This causes lots of frustrations as her hand cannot write everything in her head.
She has got a lot of friends at school and they’re very caring towards her, which is lovely. It has affected her in a big way - she can’t go to sleepovers and we wouldn’t want her to for fear she may have a flare or become unwell as days can be very unpredictable.
As her mum I have also come to know who my true friends are. Many have fallen away not believing she had an illness or fed up of us constantly cancelling as she couldn’t attend play dates. Many chose not to take the time to understand our circumstances and how hard and challenging it is and how very very protective I am over her.
Those that did I am forever grateful for.
Her current school is very supportive. The last school she attended wasn’t, we really struggled and she experienced unkind behaviour. She was bullied over the way she walked and ran, this was seen by a member of staff when a group of girls were getting her to run around the playground, as she was wearing splints she couldn’t run well and they mocked her and called her names. This was heartbreaking to hear especially as a teacher witnessed this happening. She couldn’t do PE there either so they made her stand on the side, so we changed school.
The new school is fantastic and very supportive. That’s not to say there aren’t still issues. But it’s a learning curve for us all and it’s a journey which the headmaster and teachers appear to have fully embraced. It’s not easy, but they are helping her, so we’re much happier. Dropping her off and not being sure she’s going to be ok is absolutely awful. Now I drop her off and I know she’s got the best care, and she’s going to be fine.
Managing the condition
You get the diagnosis, then all the medicines and you think, “is this really happening?”. Hearing that your child has to take chemotherapy to protect her joints as an adult is one of the most frightening things I have ever had to come to terms with. We agonised over letting her have it for months and the decision was not easy. But we know now that this is to protect her future and keep her mobile. We get lots of support from the hospital. They’re amazing; I cannot fault the care she gets - the nurses on call, the physio, the OT - they’re absolutely brilliant with her. It makes such a big difference and her consultant has always been fantastic with us.
As she’s got older, her arthritis has got more stubborn and the flares are more frequent. I think now we know what it is, we know what to look out for. Because she’s on suppressants, she picks up pneumonia quite a lot. Whenever she’s ill, it brings a flare on. It’s spreading round her joints more - it’s in her fingers, her elbow. She complains more about her hips. I think as she’s getting older, she recognises it more. She’ll now tell you where the pain is, whereas before she’d just cry.
Luckily, she’ll be continuing on to secondary school at the same place she is now. We’re really concerned about the future. You don’t know what the side effects are of the medicines she is currently taking, how it’s going to affect puberty, or how it’ll affect her when she’s older. It’s a worry, but all you can do is try and make the best of things. Her arthritis is not going to go away.
We heard about the children’s activity weekend organised by CCAA, but we didn’t do it because Amelie doesn’t want to hear other people's stories. We think it will really help her though, so we’re concentrating on that for 2017. She feels really isolated and constantly says, “why am I different?” and “why is it me?”. She said the other day: “why did my body fail me?”
The Arthritis Care Facebook page has really helped. When you’re having a bad day, you find there are 15 other people having a bad day. It’s reassuring that there are other people in the same position.
I heard about Arthritis Care through my mum. I’m a personal trainer and I’ll be doing some fundraising for Arthritis Care in July 2017. I’ve got seven people who have never run before who are doing a 5k colour run (where they get sprayed with paint!). They’re all doing it for arthritis.
We’re getting to the stage where we’ve accepted it and we’re going to do what we can. It’s not going to go away, so we want to make as many people aware as possible and pull knowledge together.