Lupus Awareness Month, which runs until Friday, was established to highlight the prevalence of this little-known disease which, as hairdresser Llydia Bannocks found, can even elude doctors in their diagnoses.

LIKE many others across the country, Blades Hair Co, in Southchurch Road, Southend, recently staged a “Put on Purple” day to raise awareness of immune-deficiency disease lupus.

For team member Llydia Bannocks, Bannocks, it meant a lot.

She was diagnosed with the disease seven years ago after about two years of debilitating symptoms and misdiagnoses – which included having inflamed lymph nodes removed. The condition is incurable, affecting mainly women, and Afro- Caribbean women in particular, causing their immune systems to turn against themselves and attack healthy tissue.

After suffering successive misdiagnoses of increasingly debilitating symptoms, such as lethargy, swollen joints and hair loss, it was eventually Llydia’s mother who diagnosed her after watching a TV documentary on the disease.

Llydia, 34, said: “In 2005, I liked to go to the gym because I was a super healthy person and a manager for a chain of salons, but then, suddenly, became very ill and would just sleep and sleep.

“One day, I experienced intense pain in the muscles between each rib when breathing.

I started to notice my hair was coming out and I would get an intense rash when in the sun.

“Luckily my GP, Dr H.

Siddique in Thorpe Bay, was amazing and kept battling to find different avenues, but many of the consultants I was seeing were making me feel neurotic, or saying I was working too hard.

“I also saw virologists and a breast consultant and had to have my lymph nodes removed from my armpits and groin because they were inflamed, which meant we had to rule out Hodgkin’s lymphoma, too.

“Eventually, my mum happened to be watching this TV programme and read about Dr David D’Xruz, of St Thomas’s Lupus Trust – she was watching it thinking ‘this is Llydia’ and Dr Siddique referred me to him.

“I’d never been so relieved in my life.” Llydia was prescribed anti-malarial drugs and steroids and she is now in remission, though still gets symptoms, such as headaches due to swelling around her brain, and attends St Thomas’ Hospital, in London, for check-ups, as well as testing her kidneys once a month at home.

For the most part, however, she has a normal life – though simple things, like colds, can trigger joint pain as her immune system goes into overdrive.

Llydia said the main challenge after the diagnosis was working around this new reality.

“The hardest thing is your life to change,” said Llydia.

“Nobody likes being told to make changes and it probably took me a good three years to accept I had lupus, but I have a very supportive partner of 14 years, who understands the days I don’t feel great.

“I’ve also learned to acknowledge those days and give my body a rest. Despite that, I’m still career-minded and I’ve led a very healthy, stable life and have been in remission a very long time – I also feel very lucky because lupus can be fatal.”

HOW TO BACK CAMPAIGN

PUT on Purple (POP) is a
campaign asking people to take
a selfie wearing something
purple, before sharing, donating
to the St Thomas’ Lupus Trust
and nominating friends on
Facebook and Twitter. To donate,
text POPP01, followed by a
donation amount, to 70070.
Anyone who suspects they may
have lupus can visit www.lupus.
org.uk
for information and advice.