Kim Kardashian recently admitted to suffering with Lupus – a long-term condition causing inflammation to the joints, skin and other organs that Selena Gomez also suffered with. Speaking on the Today show, Kim revealed that she felt depressed while she was going through all the testing. Amy Baker, 25, is a student, who lives in Matfield, Kent with her grandmother Sheila. Here, she shares her personal experience with Lupus and how it drove her to depression, as well as how she managed to get her life back on track.
“Sitting with my mum in a room at Great Ormond Street Hospital (GOSH), we had just attended another appointment with a specialist doctor. I was fifteen years old and for four years, I’d had test after test to get to the bottom of a mysterious illness that had given me swellings, rashes, joint pain and tummy trouble.
“A nurse approached us. ‘Are you the young lady with Lupus?’ she asked. We looked at her blankly. Yet this was how the news was broken that I had a potentially fatal autoimmune disease that affects around one in every 3500 people in the UK. It causes the white blood cells not only to attack infection but other cells in your body. It can also attack organs and cause organ failure.
“Too stunned to speak, neither of us asked any questions about the diagnosis at the time. But I was to discover that lupus would impact on everything in my life – my education, career and even having a family. The fact that it could kill me – and some of my network of friends with Lupus have already lost their life to it, is very frightening. I’m constantly reminded of my own mortality.
“I’d never been a particularly healthy child and I’d had recurrent episodes of tummy problems and Raynaud’s syndrome – when your extremities turn white thanks to poor circulation – and was always at the GP.
“When I was 11, my grandmother noticed I was suffering from chilblains and she suspected something might be more seriously wrong. Mum took me back to the GP who referred me to GOSH. I underwent a battery of blood tests, allergy tests and even had a camera up my nose. More symptoms appeared – red welts all over my body, my eyes and lips would swell up randomly. It wasn’t comfortable, but not particularly painful. Still, no one could explain the illness. But there is no one test for Lupus. It’s a case of ruling other things out. In fact, the average person takes seven years to be diagnosed, so I suppose I was lucky that it was only four.
“When the nurse blurted out that it was Lupus, mum and I were shocked. I knew nothing about it. The doctors put me on a barrage of immune-suppressant medications, a stomach protectant and a mild form of chemotherapy to help dampen my overactive immune system. It may sound strange but after that, I put the illness to the back of my mind. I’m a pretty carefree person anyway, and simply wanted to get on with being a teenager.
“The medication helped and it wasn’t until I started studying my A-levels that the illness started to take hold. Some days, I couldn’t even get out of bed to study because I was so fatigued. I missed around 25 per cent of my school year and my dreams of becoming a vet disappeared. Still, I passed three A-levels and decided to start work in retail.
“I liked my job, but increasingly I found it difficult to do full days. Within two years, I had to give up my job and apply for benefits. It was a dark time. I put on four stone in weight thanks to the new drugs I was taking and, as Lupus is an ‘invisible illness’, I had to go to a tribunal to prove that I was ill. Thankfully, I had Citizens Advice on my side who helped me fill out all the forms. Even picking up a pen was exhausting and painful. I ended up with a little money each month, but it wasn’t much. I was depressed and put on anti-depressants.
“Since then, I’ve learned to manage my illness and have educated myself with the help of the charity, Lupus UK. Regular counselling through a charity helps my depression and anxiety. I take nine prescription medications and seven supplements. I found that a mainly plant-based diet – with some meat very occasionally – is better for me. I also have physiotherapy and hydrotherapy to help the pain in my joints. I avoid the sunshine, which can give me rashes and sunburn very quickly.
“I’m waiting for exploratory surgery for endometriosis, too. Every woman I know who has lupus has had problems with her period and I’m no exception. Whether this will affect my ability to have children is uncertain. But with a 50 per cent chance of passing Lupus on to a child, I don’t think I could take that risk anyway.
“But since May, I’ve discovered cannabis oil supplements and they’ve changed my life. While they’re expensive at £65 a month, for the first time in eleven years, I feel normal again. I was on a hen weekend recently and before taking the supplements, I’d have been worried that I wouldn’t be able to do half the things we did. But I was fine.
“Things are looking more positive. I’m about to start a degree in architecture and have very big goals. I want to design amazing one-off buildings all over the world. Lupus may have held me back for the last few years, but it’s not going to stop me now.”