Patients Stories
When my daughter, Rosanne, was 12 years old she developed SLE. That was in 1982.
In the early days my daughter would comment, before she went off to school, that her fingers felt stiff. We put this down to 'growing pains', but a few weeks later I noticed she had some difficulty in climbing into the car. I then found that her knees and ankles were swollen, so I immediately put her to bed and called our G.P.
Some of my earliest memories are of St. Thomas' Hospital, my mum and I used to visit quite regularly. We were not visiting anyone in hospital, my mum was getting treatment for Lupus.
After many years we moved to the USA because the climate was warmer and that was good for my mum. She seemed to get better and everyone was very hopeful that her condition would continue to improve, it did and we were all very happy.
My mother passed away in September 2005 and my father in November 2005 with my 15th birthday and my brother's 13th birthday falling slap-bang in the middle. Fortunately for my brother, he was able to stay with another family after the unfortunate losses suffered. I on the other hand did not deal with their loss in the most conducive manner and as a result of not processing my grief, my Lupus was triggered, in December 2007 I was placed on kidney dialysis and my life changed forever.
I woke up one July morning in 2004 with what seemed like a migraine that resulted in me taking a day off work. The following morning I woke with what seemed like flu like symptoms. Leading up to this I begun to feel very tired, I had noticed weight loss and that my eyes were very sensitive to the sun. Subsequently, I went to my GP as I had noticed a large gland in my groin, pains in my legs right down to me feet and toes, high temperature and night fever; I was having difficulty in walking very far and was extremely fatigued, my stomach area was tender to touch.
I am Nikki, aged 32. Crafter extraordinaire, lover of percy pigs, big foodie, doctor and 8 years into my lupus diagnosis. Basically, I’m learning to live my life despite lupus.
My story started during my first year as a junior doctor. I had graduated about 8 months previously and was working all sorts of different shifts and my body was just exhausted.
My name is Patty, I am from Colombia and I married to an English man since 1998. I am in my early 30's, I have 2 children, my son Alvaro he is 15 years old and Julie 14 years old (Julie was diagnosed with Lupus June 2001). After Julie was diagnosed with lupus I had so many similar symptoms my GP suggested that I had some more sophisticated blood tests done. When I went to see my GP to have the blood test results, she explained to me that I needed to go to see the lupus specialists but at least I found the answer to so many different questions that I had in the past about my health.
I had known something was wrong for a long time. Having a baby was an energy-draining event in 1993, to be certain, but this fatigue was 'different'. I told my husband that I felt like this was "the beginning of feeling tired for the rest of my life"! Of course, we would shrug it off, because having an infant in our home for the first time seemed to be the obvious explanation for my exhaustion.
On 29th July 1999 I woke up with what I thought was just a headache. I went into work as usual in a bit of a grump because of the pain, which I had never had before and started to plod on. A lot of my work is on a VDU so throughout the day this was making the headache worse. It got to the point that I couldn't keep my eyes focused or hold my head up and I was feeling extremely sick. It became so unbearable I phoned my manager and she told me to go to the doctors and then home.
I’m going to start with how I was diagnosed with systemic lupus erythematosus (SLE). I started having sore pains in my shoulder in October 2014, I was still in my final year at high school doing GCSEs. My mum had phoned my GP asking for some blood tests to try to pinpoint what could have been wrong. They all came back normal, apart from one that had come back showing inflammation, but they couldn’t tell where it was coming from.
In the month of November 2003 I was feeling unwell. I started to feel general malaise and loss of appetite and weight. Painful rashes started to appear around the soles of my feet, ears, cheeks and this exacerbated to an ulceration of my mouth. My parents initially thought this was part of the growing up process but they became concerned so arranged an appointment with my G.P.
It was Christmas 1999. I was in training for our annual figure skating show. I had been skating for 7 years before hand and had always come back to the Island with a medal...
Leaning over the barrier, I called up to my mother, Trina. 'Mum, my back hurts.' Mum just rolled her eyes and told me to get on with my skating. I just got through our show. I had joints swell up where I didn't think they could!!
Sophia Brown was known for her appearance on Big Brother, she sadly passed away aged just 30 in 2012. This was her story: 1989. That’s the year everything changed. The year a seven year old was forced to grow The year I was diagnosed with Lupus. This is my experience of the disease people have begun to fear but do not know enough about...
She's a Psychologist, Banker, Teacher, Entrepreneur; Chef, Housekeeper, Taxi Driver, Cleaner; Events Manager, Doctor, Friend and a billion other things. She's intelligent, funny, courageous, ambitious, driven and incredibly humble. To me she knows everything and nothing can knock her down. In my eyes, my mum truly is one of the most amazing people in the world.
My best friend and I were in the diner, talking. As usual, it was very late and we were eating French fries with gravy. Like normal girls our age, we spent a lot of time in the diner while in college, and most of the time we spent talking about boys, music or trivial things, that seemed very important at the time...
In answer to the question “How do you feel when you suffer from Lupus?”
Imagine what it feels like when each and every breath hurts
There’s a stabbing in your lungs - it brings a sharp reminder that something is wrong
You can’t sleep at night as you track the fierce pain that travels across your chest, up into your shoulders, neck and arms ……
‘Twas the night before Christmas and all around my body
The wolf was stirring like the hottest hot toddy
My hands and my knees were just not playing ball
And I wasn’t looking forward to Christmas at all...
The Christmas tree was decorated, looking quite stunning
But the wolf was on the prowl, oh so very cunning.
I needed to sleep, I felt so tired
The thought of a Lupus Christmas leaving me totally uninspired.
My name is Vanisha, I am a 30 year old optometrist living in London diagnosed with SLE lupus in 2018. Never in my wildest dreams did I think at 25 I would be on lifetime medication and taking daily pills to survive. I had no idea what lupus was apart from the little I learnt about it in a lecture at university.
