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29th October 2018

Living with Lupus

Guest blog from Susan Bradfield, 43, a Talent Agent, Chaperone, Wife and Mother, diagnosed with SLE Lupus and Sjögren’s Syndrome in 2007.

“Lupus SLE (Systemic lupus erythematosus) is a long term condition causing inflammation to the joints, skin and other organs. There is no cure, but symptoms can improve if treatment starts early.”[1] Sjogren’s (pronounced Show-grins) syndrome affects parts of the body that produce fluids like tears and saliva, which can lead to dry eyes and a dry mouth, among other symptoms.[2]

On a typical day, Susan’s skin is very dry and sun sensitive due to Lupus. On a bad day, her skin feels like it is crawling from the inside out.

During Lupus Awareness Month, SunSense spoke to Susan about the impact Lupus and Sjögren’s Syndrome has had on her day-to-day life:

“No day is the same for me. There is no set routine as such; I have to base every day on how my body is feeling. Some days I am unable to do anything physical, but every day is different. Some days I wake up from a long sleep feeling like I haven’t slept at all. For me, one of the greatest challenges has been learning to adapt.

“Two years ago, I made the hard decision to give up my career as a professional Make-Up Artist. I was in the middle of a bad Lupus flare, I was severely anaemic and I was in a downward spiral. Physically and mentally I found that I couldn’t cope with the pressure and intensity that this kind of work needed from me. The pinnacle for me was when I had a moment of ‘brain fog’ whilst working with a regular client and I couldn’t remember their name whilst I was talking to them; I had to discreetly open my diary to see what I had written in. That was the moment that I knew I had to change my life and take control.

“With the support of my GP, I changed hospitals and consultants and finally I started getting answers about the Lupus and the Sjogren’s and all that comes with these autoimmune diseases. Having the strength to stand up and ask for change was a turning point for me. I am still learning to deal with having Lupus along with all the other medical issues I have, but accepting it is the first stage. Living with it and not letting it rule my life is what I am still working on.

[1] Overview (Internet) 2018 (cited 8 October 2018)  Available from:  https://www.nhs.uk/conditions/lupus/

[2] Overview (Internet) 2018 (cited 8 October 2018) Available from: https://www.nhs.uk/conditions/sjogrens-syndrome/

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