Anne-Marie's Story

It all started around the age of 17. I would get stiffness in my wrists, which was making driving uncomfortable at times. I thought nothing of it, for the first few months, but then I started to get stiffness and swelling in my knees as well. Being so young, I didn't imagine it to be anything important or worth worrying about, but my mum was concerned about it and she encouraged me to go to the family doctors.

Over the following months I made a number of appointments for the doctors, each time being tested for something else, and every time the results came back negative. They tested me for conditions including sickle cell and arthritis, but as the symptoms progressed they ruled out the possibility of a trapped nerve. Over time, the swelling and pains started spreading to my other joints. As you can imagine at this point I started to get a little concerned. I had nearly completed 3 years worth of courses in childcare and I felt that I was not in a fit state to hold a child let alone care for a child on a full-time basis.


My doctor decided to refer to the local Rheumatologist Clinic at Wexham. There they carried out more tests and examinations. Being a specialist in the field, they were able to recognize some of the smaller but significant symptoms, such as my rosy red cheeks. They asked me questions like, had I had a viral infection around the time of the symptoms occurring. The Specialist explained that I had the symptoms of a common disease called 'Lupus'.

Lupus is a condition whereby the body's immune system goes into overdrive and starts to attack itself. The results for this disease came back negative but it is an illness, which is very hard to diagnose, due to its ability to mimic so many other diseases. This is why they also refer to it as the disease with 1,000 faces. My symptoms progressed to extreme fatigue, depression, hair loss, anemia and a facial rash, they call this the 'butterfly rash' because of its shape. The Specialist put me on some tablets to help prevent flare-ups and gave me anti-inflammatory, which seemed to help keep the swelling down.


As the time went by I would continue to live my life as normally as I could. Stiffness and swelling became a daily cycle. The flare-ups would get worse and the medication would increase. Appointments at the doctors sometimes became a weekly affair, so that blood tests could be carried out the measure the activity of the illness, and to make sure that I did not get to a dangerous level of anemia. I would go through different stages after finding out that I had the disease, sometimes I would try and read as much information as I could and get mad, and other times I would get depressed about it and try and forget that I ever had it.

Over the years my symptoms got worse. One morning I woke up unable to breathe very well. I didn't like to bother the doctors as I felt that there was people a lot worse of that needed more help, but eventually I made an appointment and went to the doctors. When the doctor examined me, he suggested I went to A&E and I was admitted with a suspected blood clot in my lung. Before that day I had never been admitted into hospital, being in hospital was bad enough but being bed bound was even worse.

They did various tests while I was in hospital and it was discovered that it was not a blood clot but an inflamed lung. I have since this time been diagnosed with having Systemic Lupus Erythematosus (SLE). In the 9 years since the symptoms started. I have now been into hospital 4 times most serious case was due to Fluid around my heart, I had to take it easy for quite awhile, and was taking steroids to control the illness, which caused me to gain weight. My heart is clear of the excess fluid now, and it's been 2 years since this episode. I am told that my condition is not mild, but it is not life threatening either.


I have had to change my lifestyle a lot, since I was 17. I changed careers as I couldn't work with children, abut have since become an IT Support Engineer.

I am one of the lucky ones, there are many people worse of than me and I have supportive family and friends that I know I can rely on at any time.

There is no cure for Lupus so I take each day as it comes but I try to look to a positive future.