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10
Oct
'I couldn’t speak but I was determined to live for my family': Living with lupus
This October is Lupus Awareness Month – and to help raise the profile of the autoimmune disease, Cheryl Bratkowski, founder of the Harrogate branch of Lupus UK, has shared her story with the Stray Ferret.
She was only 14 when her life changed.
After developing a “weird virus” and being off school for three weeks, suddenly Ms Bratkowski experienced a range of other abnormal symptoms.
She said:
I couldn’t tolerate the sun, lights in department stores made my eyes squint and fatigued, I developed severe chilblains and Raynaud’s and was diagnosed with arthritis in my knees.
I had always played tennis and hockey but no longer had the energy to walk for long distances let alone run.
Nothing was done, and Ms Bratkowski persevered through this new life.
After studying piano at the Royal Academy of Music in London, and struggling to play because her fingers were so numb, Ms Bratkowski decided to become a music teacher in North Yorkshire.
She said:
It was here my fatigue became worse and I developed some kidney problems. It was demanding as I was the only specialist teacher for the county and after a year I noticed my health deteriorate further.
I was so tired I could only climb the three flights of stairs to my flat if I knew I was going to be staying in. My memory was poor - I remember checking the electricity meter 20 times one day because I couldn’t remember what it said.
The Harrogate branch of the Lupus UK support group meet up regularly.
It was August 1984 when she developed a mark on her cheek that looked like a bite. It then evolved into a raised triangle that was mirrored on her other cheek, and eventually spread over her entire face into what is known as a butterfly rash.
After making a hospital appointment, Ms Bratkowski was diagnosed with discoid lupus and given medication to deal with the rash, but not other debilitating symptoms.
After fainting at work, and another specialist doctor appointment, it was discovered she had a more severe form of lupus - systemic lupus, which affects your whole body, including internal organs.
After starting yet more medication, Ms Bratkowski managed her symtoms well for two years, before experiencing a major flare up.
She said:
I had a fever of over 40 degrees, severe edema and liver inflammation and was hospitalised for weeks. My weight had dropped to 50kg from 60kg.
This flare was one of the worst I experienced but lupus now decided it was on a roll and continued to plague me for the next eight years causing pneumonia, heart problems and neurological complications which have caused scarring.
When Ms Bratkowski became pregnant there were fears of complications. She got to 33 weeks pregnant when her placenta calcified – but bother her and her son, Adam, were able to be saved.
She said:
Unfortunately the steroids had destroyed my bones and I broke my spine. I was diagnosed with osteoporosis and had the bones of a 70-year-old at the age of 33.
I accidentally became pregnant again when Adam was 11 months old. I had a good pregnancy. I had an elective caesarean at 37 weeks and gave birth to Tess. After each delivery my placenta was sent for testing to see if my antibodies had passed to the baby but they hadn’t.
Unfortunately when my hormones changed after the birth I had a major flare up.
Ms Bratkowski was rushed to Harrogate District Hospital, but with no specialists there the correct treatment wasn’t given.
She said:
I became ill with pneumonia and couldn’t move. My husband came to visit with my son and young daughter looking petrified with the prospect of being a single parent.
Although I couldn’t speak I was determined to live for my family.
Eventually a specialist rheumatologist was called, who was able to give the correct medication and Ms Bratkowski was discharged.
Her lupus continued to flare up, resulting in a mild heart attack at 38, but after various medical treatments it is now well controlled.
She said:
The improvement was amazing. My blood tests improved and I felt less tired. I could go in the sun and play sport again. I am now 65. I work as a professional musician and still teach locally. I play tennis twice a week, go to the gym and swim, walk and cycle.
Ms Bratkowski asked Lupus UK if she could set up a support group in Harrogate, and it now has 18 members who meet up every few months. She also raises awareness for the illness at Ripley Castle twice a year.
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