Kay's story

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I was diagnosed with lupus in 2007 by Professor D'Cruz. However, my story began in childhood, so I will try to give you a condensed form of almost 40 years of suffering in one way or another, without boring you to tears.

Childhood - What appeared to be eczema on my arms and backs of knees and chest problems. At the time I was told it was bronchitis. Allergies or intolerances to several things such as animals, grass, perfumes. No testing was available but it was clear to me at the time something wasn't normal. I always felt different to friends and family.

Puberty/Adult - At 15 I developed a bright red facial rash. It was swollen, sore and uncomfortable. This was followed by very painful scabs on my scalp and back of my neck. I was told it was atopic eczema. Chest problems became worse and I developed asthma, almost anything sets me off. The skin gradually cleared as time went on, but I had to avoid the above mentioned items. I had a sore rash all over my body once and had to take antibiotics.


20+ - Started with aching joints in shoulder and neck which gradually worsened. My body would not tolerate anti inflammatory drugs and pain killers. Pain management specialists prescribed several things which just made me violently sick and at one time I even collapsed. One day after having a permanent headache for 3 weeks I broke out in a facial rash. I was told it was shingles, 10 tablets a day were prescribed, which made me so ill and sick. My facial glands swelled so much I had trouble swallowing. It was like a rapid weight loss plan - 1 & ½ stones lost in 3 weeks. Wow!! The rash likes to come back every so often.

30+ - Joint problems really became too much for me as it had spread down the spine. I had to give up work as I had constant pain. Latest MRI suggested acute disease in the lumbar region. Violent stomach pains that over the years has evolved into not much pain but inability to control my bowels at times. During the years of investigation into this, 5 different doctors diagnosed me with 5 different things such as; inflammatory disease, IBS, kidney stones etc and each doctor tried to treat me with different drugs which my body didn't like!


40+ - My rheumatologist did some blood tests on me and recommended physiotherapy. I tried to explain to the physiotherapist that I could not do certain exercises she had set for me as I could not bend from the spine, but was told to do it regardless for 1 week.

 When I returned to her I was in a terrible amount of pain and could hardly walk. I had to have traction every day. Whilst this was going on my mouth broke out in an ulcer which I hardly ever suffered from and my face started to swell and go bright red. When I looked in the mirror I was immediately taken back to what I looked like at 15. I told my rheumatologist this. More blood tests revealed a low positive and more testing was needed which revealed nothing. By this time I really had enough of suffering. My doctor suggested lupus but wasn't prepared to make a diagnosis, which I fully understand now as it's such a complex disease. But at the same time he wasn't prepared to refer me elsewhere. I really had to push for a referral.


I now suffer with semi permanent headaches, permanent joint pain, the feeling of exhaustion but no sleep, irritable bowel syndrome to point of incontinence if I'm not careful and sore dry eyes. The latest thing is needing lots of dental treatment but the anaesthetic not working where it should, so now I have to be sedated before treatment. I have high blood pressure, chest pains and freezing feet when I go to bed, even in summer. When I come in from the cold weather, one or both hands take ages to warm up. Intermittently, I have blood traces in my urine and just recently my skin likes to break out in what looks like hives on my neck and arms. My thyroid is barely functioning now.

If you managed to get to the end of my story and if you are a fellow sufferer or indeed a medical professional, I'm sure you will understand why I am pleased with my diagnosis. If it wasn't for the continued hard work at the Louise Coote Lupus Unit and the fundraising by the Lupus Trust to keep it going, I really don't think I would have had the opportunity to have met with a specialist team and finally got a correct diagnosis.

At the moment I'm just grateful this unit exists and understands my problems. I have no physical way of fund raising and am not a rich person, so I have set myself a yearly goal of making a small donation when I have my yearly check up, which I now look forward to because the staff actually know how to help me. I have also taken part in drug trials at the unit with Dr. Davies.

As this disease likes to imitate other diseases I would like to see medical professionals made more aware that they can't rely on just blood tests to diagnose and that they certainly need to look at an overall picture of a patients medical history.