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Living with Lupus

Hey there!

I’m Emma-Jayne but more commonly known as Emma, Emmsie or Squeaky. I am 42 and I live in Norfolk, by the sea. I have a dog and two cats who are my children; yes I am that mad cat/dog woman that everybody recognises! I love history, animals and seeing new places.

Pageant life and all that it encompasses has given me my zing back. I’m having the time of my life and have met so many remarkable, amazing and beautiful people. I only started on my self-confidence journey after taking part in a world record attempt; this was the largest plus size photo shoot for Scarlett and Jo, a superb designer brand. I’m using my platform as a Miss Voluptuous finalist to raise awareness of Systemic Lupus Erythematosus commonly known as Lupus. Alongside that I am offering support to newly diagnosed patients. My platform is very personal to me as I was diagnosed with Lupus at the age of 28 after being unwell since 13 years old. Just before I was diagnosed I was seriously ill with the disease affecting my lungs, kidneys, heart, joints, muscles…

everything really! I won’t bore you with the details but believe me I had a close call.

When I was diagnosed it was 2003 and the whole social media explosion hadn’t really taken off yet. I had no support, apart from family and friends, and I felt so alone. I came out of hospital after being diagnosed on Christmas Eve and felt as if I was in a bubble. People were celebrating the festive season and I was in a wheelchair knowing that my whole life had changed. I do not want people to feel like they are alone, that they have no hope, that no one is there for them. I have a new baby I call ‘Squeaky Says: A Lupus Journey And Me’. It’s in its’ infancy and it is a video blog on Facebook describing how I feel, what my life is like, what lupus is etc. I do struggle and I want to share that, I want to show that it is ok to feel horribly broken. I have already had three people reach out to me for support, I am so proud and this is just the start. I am also a local ambassador for The Hibbs Lupus Trust, a member of the local fundraising team for Marie Curie and a fundraiser for Lupus UK.

Rachel, Emma-Jayne and Tracie
Finalist Emma-Jayne, pictured center with fellow finalist Rachel (Left) and Reigning Queen Tracie (Right)

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