"Too young to have arthritis"

I am Carrie, a 21 year old music student from Swansea, currently living and studying in London. Like any normal 21 year old girl, I love spending time with friends and family, shopping and of course, studying to achieve the career I want.

However, what most people don't see is that I suffer with several long term chronic illnesses. I have Rheumatoid Arthritis, a genetic condition of the convective tissues and collagen called Ehlers-Danlos Syndrome, Postural Orthostatic Tachycardia Syndrome and Polycystic Ovarian Syndrome.

I can remember from about aged six, and at that time I was a keen little ballerina, suffering from what doctors called 'growing pains', especially in my ankles and knees. I was told to give up ballet and rest if it hurt but I was assured that I would grow out of it. I never did. Fast forward twelve years, I was head girl at my boarding music school in Manchester, in my A-level year and about to start my music college auditions. It was almost as if it happened overnight. I woke up one morning in agony, unable to move my hands because they were so stiff and the fatigue was unbearable. I put it all down to stress and rested up and the next day the symptoms seemed to have disappeared. Over the coming months, this pattern of symptoms continued to the point that by the time I returned home for my Christmas holidays, I could hardly dress myself. My parents were concerned by my symptoms and sent me to be seen by the doctor who carried out blood tests to check for Rheumatoid Factor, erythrocyte sedimentation rate (ESR) and C-reactive protein (CRP). My bloods showed negative for rheumatoid factor but elevated CRP and ESR. From this point it took three months for me to be given a diagnosis of Rheumatoid Arthritis. By diagnosis point, I could not carry out even very simple tasks like dressing, eating or walking unaided and depended on my parent’s help day and night. I was finally admitted into hospital, wheelchair bound and requiring morphine for pain relief where I spent the next 9 days. My CRP had reached 135 and I had also developed a plural effusion in my lungs. Despite this, it felt like a relief to me and my family to get a diagnosis so I could finally start to receive some treatment.

After three intravenous doses of steroid to help bring the inflammation down, I was started on the drug Methotrexate and then Hydroxychloroquine, but after side effects like severe sickness, chronic fatigue and losing a lot of my hair without much effect on the pain and state of my joints, I was taken off and moved onto infusions of a different biologic treatment called Tocilizumab and this drug change has given me a lot of my life back.

Having rheumatoid arthritis can be challenging and a hard diagnosis to come to terms with. The pain and fatigue is often debilitating and can dramatically change how you live your life. The hardest thing for me has been the stigma attached to having arthritis at a young age. Too often I hear the phrase ‘But you are too young to have arthritis’.  People are not aware that you can get rheumatoid arthritis at any age from 16 and there are about 12,000 children under the age of 16 with Juvenile Idiopathic Arthritis. I want to spread awareness of inflammatory arthritis and also raise money. In August 2013, I swam the Great London Swim and raised over £1600. I am determined not to let my arthritis get in the way of living my life!

 

Spring 2014, by Carrie Thompson