Living with lupus...
Actor, former member of girl band Eternal and TV presenter Kelle Bryan, talks about living with this autoimmune condition... ‘People think lupus is very rare, but one in 3,500 people in the UK , most commonly young women between 18 and 45, are thought to be affected by some form of the condition. Lupus occurs when the immune system goes into overdrive and produces too many antibodies. Researchers have not yet identified the cause and there is no cure, but it tends to run in families. It can be controlled with drugs in most patients.
The first big hurdle was getting a correct diagnosis. There is no single test and the symptoms can mimic other conditions. I developed lesions on my face and scalp, in my nose and on my arms and legs, plus mouth ulcers and arthritic symptoms. Doctors said I might have HIV – or maybe hepatitis C; the mouth ulcers could be gingivitis, the aches and pains down to sleeping badly and so on.
Luckily my dentist knew about lupus and put me in touch with a specialist. In 2000, I was diagnosed with systemic lupus erythematosus (SLE ), which affects the major systems of the body and can cause hair loss and skin problems. I also have vasculitis (inflammation of the blood vessels), which is linked to lupus.
I was told that pregnancy could be dangerous, for me and for the baby, but my husband Jay [Gudgeon] and I were prepared to take the risk. Our first baby – Regan – was born in October 2011. He was fine and so was I, apart from a little flare-up eight months into breastfeeding, which was controlled with medication.
Our little girl Kayori was born in September 2013. All went well until – again – eight months into breastfeeding; this time I had a really aggressive attack. Despite taking meds, the symptoms escalated out of control.
In April 2014, I had a seizure. A scan revealed the lupus had affected my brain, and also caused muscle deterioration so I could barely move – I struggled to eat or speak for days. I suffered psychological damage, too, with acute paranoia – it felt as though I was behind a glass wall shouting and screaming at people on the other side, but no one could hear me. I couldn’t sleep because I was so scared.
I was prescribed a form of chemotherapy and now I am well and working again. But each day brings physical and psychological challenges. Sometimes it’s hard to stay positive, but I look at my children’s faces and there is no way I am giving up. Watching comedy movies with Jay gets me out of the humdrum of life. My big treat is his apple strudel, hot with loads of cream.
My motto for really tough days is ‘just do it’. Get through the pain by taking your mind off it. Get out of bed and have a shower, go for a walk or get someone to push you in a wheelchair. Distract your brain. Change your environment. Just do it…’
SYMPTOMS OF LUPUS
● extreme tiredness ● joint and muscle pain ● asymmetrical butterfly rash spreading over the cheeks from the bridge of the nose ● hair loss ● dry scratchy eyes ● depression ● kidney problems
HOW KELLE KEEPS HER SYMPTOMS IN CHECK
● A low-carb diet: predominantly fish, salads and vegetables ● Hot water with lemon instead of tea or coffee ● Goat’s milk: easier to digest than cow’s and good for the skin ● Exercise: running, yoga, swimming and kickboxing
Kelle is patron of the St Thomas Lupus Trust, www.lupus.org.uk
FOUR HOLIDAY ESSENTIALS
iS Clinical Sheald Recovery Balm (£43 for 60ml, www.victoriahealth.com): this multitasking skin healer, formulated for post–surgery and post-cancer treatment, is not cheap, but a relieved father told me it healed his son’s severe sunburn overnight.
Boots Rehydration Treatment (£2.99 for six sachets, www.boots.com): the symptoms of heat exhaustion – eg, headache, dizziness, sickness and loss of appetite – deplete salt as well as fluid levels, so take this for instant relief.