Kelly

“One of the nurses that I had been seeing for years and years was still there. She sat with me to have a chat about grandad which I am forever grateful for… She was incredible.”

Hi, I’m Kelly. I’m now 26 and living with Juvenile Idiopathic Arthritis (JIA). I was diagnosed at the age of 4. I fell over when we were dog walking and that seemed to be the trigger for my JIA. Sadly, the doctor couldn’t find what was wrong and sent child services to check on my living situation. It breaks my heart knowing that my mum and dad had to prove themselves as the great parents they are to a stranger!

My hand was still painful so my parents took me to A&E. They explained the situation with the doctor’s surgery and so the A&E department was more than happy to check me over. They took some bloods, an X-ray and I had a consultation. I was fortunate that they were aware of JIA and so they were able to quickly realise that I had arthritis.

Arthritis runs in my family and although researchers don’t yet fully understand why, it is thought that there are genetic and environmental factors involved.

As my grandad had arthritis and had two knee replacements, he became my superhero. He would take me to every appointment and would help me by speaking to the doctors for me. Growing up, I was very quiet so this was a really big support.

I saw the best doctor I have seen across my 22 years of having JIA - Dr Hull at Portsmouth Queen Alexandra Hospital. He quickly referred me to have splints made for day and night as my hand was incredibly stiff. The person who made the splints was called Caroline Mountain. We saw the wonderful Caroline for years. She would make me 2 splints each year, one for day use and one for night. It would take a while to make the perfect splint but Caroline was incredible! She made them from scratch from a large sheet of plastic. She had to create a paper version first to copy onto the plastic. I got to choose the Velcro colour each time and that was always my favourite part of the process.

Going to school with a plastic arm was tough. I’m so proud of myself for putting up with the bullying. I kept the splint on despite the bullying. I wouldn’t be where I am now if I had given in to bullies. They would colour their arms in with different colour pens and claim to have arthritis. I remember their names to this day!

When I turned 19, my wrist went from manageable to incredibly painful right up to my elbow. The pain was so bad that I needed to see a rheumatologist again. I was referred and awaited a new appointment.

By this time, Dr Hull had retired and I was no longer having splints made. Caroline had left and my grandad had passed away. My mum came with me but I felt incredibly anxious that my grandad wasn’t there to talk for me. I had to do this myself. Luckily, one of the nurses that I had been seeing for years and years was still there. She sat with me to have a chat about grandad which I am forever grateful for. She even examined me herself in her office before handing me over to the new doctor. She was incredible.

I was offered two types of medication; Methotrexate or Sulfasalazine. I chose Sulfasalazine and they had to prescribe it on a high dosage. I am on 3mg a day and it works really well for me. I don’t suffer from many of the side effects which is great.

2022 has been a really tough year for me and my family. We lost my Dad in January along with some family pets. I decided I needed to turn this year around so, despite the pain and the amount of determination required, I signed myself up to complete the race for life.

On July 3rd, I completed the race for life alongside my mum, my auntie (in breast cancer remission), my sister and my two best friends. I completed the race within 50 minutes. Having an autoimmune disease like JIA, this achievement was incredible and I am so proud of myself for pushing through. I have also managed to avoid a flare which is even better!

As I have many family members with, or in remission, of cancer, this is something very close to my heart and I wanted to do something to help change things for mine and others futures.

If you are concerned that a child or young person may have JIA and would like to know more, please visit www.thinkjia.org

You can find out more about Juvenile Idiopathic Arthritis here.