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Kate’s story: learning about lupus

12 year old Kate in a hospital room
13 June 2019

Kate, aged 12, from Chesterfield, was recently diagnosed with lupus. At first she’d never heard of the condition, but now she’s learning how to care for herself after her diagnosis and sticking by her positive mantra:“I control it – it doesn’t control me.”

Lupus is an autoimmune disease. Kate describes the condition: “the immune system wants to attack viruses and diseases, but sometimes it doesn’t and starts to attack my organs”.

The word Lupus comes from the Latin word for wolf. This is because lupus vulgaris, a severe facial rash rarely seen now, was once thought to look like a wolf’s bite.

Tell-tale signs

Kate did have tell-tale signs of the condition like a swollen head and a butterfly rash (a rash that goes up along the cheekbones). She was tired, had lost a lot of weight and was losing her hair. She also had pain in her feet. Many people who have Lupus will be affected in different ways and their symptoms can differ greatly.

Now the cause of her symptoms is known, Kate has started a treatment plan to manage her condition. Mum says: “She can’t do too much. She’s got to pace herself.” Kate will likely be on medication for life. She’s been at the hospital having intravenous steroids and medication and has been feeling much better already.

In some cases of lupus UV light (sunlight) can bring on symptoms. Kate has been advised to wear factor 50 suncream when she’s outdoors. Her mum has been looking for protective clothing and she’ll have to be really careful in the sunlight. Some people with lupus feel unwell after going out in the sun and it can trigger symptoms such as skin rashes, itching, and burning. It may even increase joint pain and fatigue.

Staying at Sheffield Children’s

Kate kept herself busy in the hospital by going to the scout group and painting in her room. About their care at the hospital, mum says: “Our visitors couldn’t get over how nice it is. They said it’s lovely. Kate’s friend was really nervous to come but when she came they went and sat out on the window seats in the corridor to chat. We’re so grateful for the private room. Everyone is really lovely, they work wonders.”

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