Patients Stories
I was a dental nurse until things went horribly wrong, not just for me but for my family too. It all started in January 2000. I had a pain in my left foot, at the time I just thought it was from wearing high heels at the Christmas work party! The pain got worse and then, when I woke up one morning, I noticed that the middle finger on my left hand was white. I felt generally unwell and then noticed that another finger was also white.
I was a teenager when I first noticed the symptoms. I had swollen knees, Rashes on my face, back and neck and would slip in and out of depression with erratic moods swings. I thought it was puberty! I was also experiencing recurring headaches, mouth ulcers, swollen knees and aching muscles in my arms and legs.
I had been sick since I was 16 years old, grand mal seizures, arthritic type symptoms in my knees and hands, pneumonia, etc. It was passed off as nothing I was just sick. As I turned to my 20's the migraines started it was passed off by Doctors as "stress related" or "hormone related". Arthritic pain continued.. anti inflammatory were prescribed.
Singer Kelle Bryan was topping the charts with Eternal when she was suddenly struck down. She shares the moment doctors told her she may never walk again.... "I could feel the adrenaline pumping through my body as I sang to a crowd of 100,000 people at London's Party in the Park. On that sunny day in Hyde Park in July 1998, it felt like Eternal had made it.
This fantastic poem was written for us by Kendra Agnew when she was 15. Kendra had suffered with SLE from the age of ten. She said "I was reading the website and came across some poetry. I enjoy writing poetry and often express my emotions when I'm ill through poetry".
Kendra sadly passed away aged just 21 in March 2011.
Imagine strolling along, minding your own business or obediently going about The Father's and BLAM! you're knocked off your feet. Well, that's exactly what happened to me in 2005. One moment I was an extremely busy office manager with no serious medical problems and seemingly the next, my primary care physician was telling me that I had connective tissue disease.
Lucy O'Donnell was 4 years old when her classmate at nursery painted a picture of her, surrounded it with stars and squiggles and took it home to show his parents."It's Lucy in the sky with diamonds," Julian Lennon told his father, inspiring one of the Beatles most enigmatic songs and carving his friend a slice of musical immortality.Lucy O'Donnell was 4 years old when her classmate at nursery painted a picture of her, surrounded it with stars and squiggles and took it home to show his parents."It's Lucy in the sky with diamonds," Julian Lennon told his father, inspiring one of the Beatles most enigmatic songs and carving his friend a slice of musical immortality.
I was first diagnosed with discoid lupus in my early 20's when I got a scaly patch on the top of my nose by my eye. I was referred to Lyle Street where the dermatologist saw that it was a discoid patch. After loads of blood tests and biopsies this was confirmed. At the time it was very scary as the information available was very old and didn't really relate to my condition as it was mostly all about SLE. I was treated with steroid creams and not much else for a long time.
I suddenly became very ill, I knew there was something wrong with me when I kept waking up in lots of pain and coughing up blood. I kept calling my mum at work because I was so worried that I couldn't breathe. My mum told me to get a paper bag and take big breaths slowly in and out, but it didn't work.
My name is Mayuri Patel , I am just one of the many people in the UK who suffers from Lupus. I was just an average child until something happened to me which changed my life. I was diagnosed with having Lupus. It was an illness which was dormant but triggered when I became ill. A disease which was hard to understand and live with, but treatable. An illness that could be fatal, and if not kept under control, never ending. From that day on, I knew nothing would be the same.
I started noticing my fingers getting stiff; I wasn't too worried at first but was aware that something didn't feel right. I seemed to be very tired in the mornings, which was very unlike me as I'm very much a morning person and I couldn't understand it. I was also getting quite down and would just cry for no reason at all, I kept asking myself why am I feeling like this I've just got engaged I feel so happy with my life it just doesn't add up.
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.
