Imagine having a condition that masquerades as several other illnesses.
For those living with Lupus – an incurable immune illness, mainly suffered by females – it’s a reality and part of the reason that diagnosis can take so long.
Hairdresser Llydia Bannocks, 37, of Ironwell Close, Rochford was diagnosed with Lupus in 2007, after two years of debilitating symptoms and misdiagnosis.
Llydia recalls: “I suffered everything from severe fatigue and hair loss to extreme pain in joints mimicking flu, an enlarged lymphatic system, intense rashing in the sun, corn beef looking pattern to the skin on my legs…
“I was extremely fit and active prior to my Lupus manifesting. I would go to the gym at least five times a week, work reasonably long hours without breaks and feel absolutely fine.
“One day I remember standing in the salon working on a client’s hair and suddenly started feeling severe pain when breathing around my diaphragm.
“I began to have such extreme exhaustion and fatigue, I would sleep for hours, sometimes 12-14 straight, yet still feel exhausted. I no longer could sit with my ankles crossed when resting due to the pain.
“But the initial investigations were inconclusive. I saw a well-known rheumatologist privately who told me I was stressed and tired, to reduce working hours and have a holiday. I knew this was not the case. I had never felt so ill!”
Eventually, after seeing several specialists and GPs, having Hogkins Lymphoma ruled out, being told she was neurotic, Llydia’s mother happened to see a TV program about Dr David D’Cruz an expert in Lupus at St Thomas’s hospital. She realised the symptoms being discussed were what her daughter was suffering with.
Llydia’s GP eventually referred her to Dr David D’Cruz, who confirmed she had a strain of Lupus called Systemic Lupus Erythematosus – known as SLE.
Llydia said: “I cried with sheer relief that I finally knew what was wrong.”
Living with her illness is a mixed bag.
Llydia explained: “It varies from day to day. Sometimes I can hardly get out of bed and others I just feel ‘normal’.
To begin with I didn’t like how the condition was limiting my life and activities, but over time, around two years, I came to terms with it. My former ‘normal’ healthy self became a distant memory and I learnt the chronic pain that I lived with daily was to become my new normal.”
And since the arrival of her much-longed for little girl Blossom Primrose, now one, life with Lupus hasn’t gotten any easier!
“I won’t lie… there are days when having lupus and a young baby is not easy, heck it isn’t for the healthiest of people, the sleepless nights and running around with no rest truly puts me and my condition under strain. But I manage and that smile gets me through.”
Llydia and partner Graham had tried to have a baby for more than ten years – and the one round of IVF they had that nearly killed her due a serious and often fatal complication called ovarian hyper stimulation syndrome.
So to fall pregnant naturally with Blossom Primrose and carry her to term, with all the complications Lupus brings with it, feels like something of a miracle to Llydia.
She said: “Lupus is an autoimmune disease where the body attacks your own body, in my condition my internal organs.
“There can be high risks of miscarriage. My body could react to the stress of the pregnancy and I could become very poorly.
“There are high risks of clotting too.
“The minute I was pregnant, which something of a miracle, I contacted my obstetrician straight away, and scan was carried out to see the health of the foetus and its position. This was done at five and a half weeks, then again at around eight weeks, and ten weeks and 12 weeks, and 16 weeks and 20 weeks.
“There can be complications and heart defects within the baby too, so the heart flows and functions between myself and the baby were monitored via scans very closely and regularly.
“I fortunately tested negative to the causes of the heart defects passed to babies from Lupus.
“While pregnant I took each day as it came, and I worked right up until the last two weeks before I was due, standing, hairdressing as normal.
“Secretly I was terrified but I kept this to myself. I knew there were risks of me being unable to carry full term but I had to just focus on each day.”
And now, despite the challenges of her condition, Llydia manages to combine being a mum, with being an ambassador for Lupus Trust and also her new business, a pop-up book shop for children and babies, Bookalicious (www.facebook.com/bookalicious.co.uk)
Llydia said: “It’s difficult not knowing if your condition will take a severe turn, Lupus can be fatal, can cause renal problems and terrible heart, lung and brain complications and that list goes on, but I don’t focus on that.
“I have always been career driven and have worked hard to achieve what I have. I continued to do so after my diagnosis. I was determined to not let it define me or become a reason not to achieve my goals and desires or to continue to have the career and focus I’ve always had. Yes at times I’ve had to learn to reign it in a bit and slow down a little but I’ve always been too conscientious to not allow my Lupus to jeopardise my work.
“My love of children’s books has always been known among friends, the gifts for their children always has been a beautiful book from me, whether it’s a must -have or a famous title.
“I never thought I would have the opportunity of sharing these with my own child let alone read to them! So from this, Bookalicious was born.
“It’s a dream finally coming to fruition, and I just simply adore it and won’t let my Lupus stop me.”
For more information on or help with Lupus, go to www.lupus.org.uk
This feature was first published in the Echo newspaper, on Tuesday, May 9, 2017: www.echo-news.co.uk