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. He detected a heart murmur and initially though she may have rheumatic fever.
However, after 2 weeks of bed rest, aspirin and antibiotics there was no improvement. She then developed a high temperature, facial rash and mouth ulcers. What frightened us most of all was that our little girl, who was normally the 'life and soul' of our household, was lying listlessly in bed all day, with no apparent interest in being up and active.
She was admitted to the local hospital and then diagnosed by the paediatricians as having SLE. In those days high doses of steroids were the recognised form of treatment. Rosanne felt better within days, but her kidneys were giving cause for concern, we were able to have her referred to Great Ormond Street Children's Hospital.
We knew nothing about lupus at that time and even though I was a nurse, I had never heard of this disease. Rosanne's paediatrician advised us not to read old text books on the subject as they apparently gave a very gloomy picture of the condition. He said that whilst lupus ws a very serious condition, great strides were being made in research and treatment. My husband and I now felt a little less anxious, as we felt she was then receiving the best possible care and attention.
We are very proud of our daughter in the way she coped with her condition. We encouraged her to lead a normal life, in that we did not want her to feel different from her friends, particularly as she was, by then, entering her teenage years and beginning to be aware of how she looked. We did not want to discourage her from doing things she wanted to do, even though on occasions we may have wanted to err on the side of caution.
When Rosanne was first diagnosed, there was little information published about lupus. Her G.P. had never seen a case in all his years in practice. Today most people have heard of lupus and much information about it is readily accessible on the internet. I wanted to learn as much as I could about SLE so that I could have a better understanding of how Rosanne's illness would affect her. Recognising new symptoms would enable me to know when it was necessary to contact her G.P. I consider it to be most improtant for a lupus sufferer to have someone they can load off onto, someone who understands them and not think they are making things up.
For example, one cannot underestimate the impact that hair loss, skin rashes and weight gain have on a young girl. Such symptoms can all cause stress which is another important feature of the condition that should not be underestimated.
Even though there are times when we continue to be upset when our daughter is unwell, we always try to be positive for her. I believe that young people are better able to cope with their illness if they can lead as normal a life as possible. Furthermore, I also believe that whilst respecting lupus and not ignoring its symptoms, sufferers having the condition should endeavour to control lupus and not let it control them.
Sometimes I would question whether my motives were right, particularly when a mother's natural instinct is to wrap their child in cotton wool. A mother has to recognise when to 'back off' and not to be overprotective. I realise there comes a time when a mother has to let go and to let their child make their own decisions. This can be hard at times, for example when I learn that Rosanne has arranged to take a holiday with friends to a 'hot' destination. I worry that her skin rashes may return if she is not waring enough protective sunscreen, or she may have mosquito bites, both of which can result in a lupus 'flare'.
As parents, we will all cope in our own way with our child's illness. To be able to listen and reassure when required and to be positive at all times will go a long way to support our children through the 'ups and downs' of lupus. Angie Barwick.
Angie Barwick was the sister at the Louise Coote Lupus Unit for 15 years.
A big thankyou to Angie for taking the time to write this article for us. As everyone knows, lupus also affects family and friends of the patient too, so if you live with/are friends with someone who has lupus we'd love to hear your stories/views and if you're shy they can be totally anonymous.