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Mayuri's Story

My name is Mayuri Patel and I am 22, 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.



My story started about 3 years ago, I was in my teens and overweight. Suddenly and unexplained, I became very ill. I was losing my appetite and showing signs of fatigue and weakness. My own doctor said I had developed anaemia, which was common in girls my age because they were lacking iron in their diet. I was put on a course of iron tablets and instructed to eat foods rich in iron.

Within the next few months things just got from bad to worse. Summer was now approaching and the hot weather wasn’t exactly making me feel any better. Infact ‘the sun was my enemy’, sunlight especially ultra violet light seemed to exacerbate the disease. I would have occasional blackouts which were sometimes accompanied by vomiting. Headaches would also occur from time to time. However the main effect from prolonged exposure to sunlight was the development of a red scaly rash on the back of my legs. I would experience double vision and objects in the distance would appear blurred. Because I otherwise I appeared to be well i.e. healthy red cheeks nobody understood the way I was feeling.

Just as the summer had its unpredictable downfalls, winter wasn’t any different. Immediately after coming home from school, apart from being extremely tired and lethargic, I would just throw my shoes and socks off and warm myself near the fire. Apparently poor circulation of the blood was causing the tips of my fingers and toes to turn white then blue on exposure to cold (the illness 'Raynaud's' is common in lupus patients. It is a painful condition that makes your hands and toes extremely sensitive to temperature changes). I also experienced occasional periods of depression and hair loss.

I was admitted to the Leicester Royal Infirmary, where I had extensive tests, including blood tests. My red blood count was way below the normal expected average. During the night I had blood tests, x-rays and even a blood transfusion. The pain was unbearable and I was petrified as I had never been in hospital before. It was like a nightmare, except that it was real. The doctors found it difficult to diagnose my illness but were close to making a decision. They said they could be sure by carrying out a kidney biopsy.

I was eventually diagnosed with lupus. The kidney biopsy was carried out to check if protein was leaking from the kidneys as they suspected some damage. Inflammation of the kidneys is indicated by the presence of protein in the urine. This can be detected by dip-stick testing.

The medication I am taking are Prednisolone, which is a steroid to reduce inflammation and suppress activity of the immune system, in addition I also take Lisinopril to control my blood pressure, aspirin to reduce muscle and joint pains and to thin the blood and Azathioprine which reduces the activity of the immune system, doctors often prescribe it for patients on steroid treatment so that their steroid dose can be smaller.

I have had lupus for three years now and not everything about me is perfect. However, I remain optimistic about my future. There is no reason why one cannot lead a near normal life provided you are regularly monitored by doctors. Also medication is important, although the side effects can be devastating but I have to live with that. There are many people walking around with lupus undiagnosed. It often only becomes apparent when lupus flares up and they become very ill like I did.

June 2005