Eleanor's story

The account below was written by Eleanor to accompany Millie Brierley's exhibition, 'Care at the Leading Edge', 1999. Her story is personal and not necessarily reflective of the experiences of other patients who took Campath-1H. It is not the type of evidence which formed the basis on which the drug was approved for treatment.

This photograph was taken of Eleanor when being treated for Campath at Addenbrooke's Hospital. Credit:Millie Brierley.

I was first diagnosed as having Wegener's Granulomatosis when I was fifteen after suffering from acute problems in my nose and the back of my tongue. At this time, in 1971 the outlook was not too good, but I never thought anything would happen other than I would get better.

Until 1990, I was treated at the Royal National Throat, Nose and Ear Hospital under Professor Sir Donald Harrison. Soon after he retired I suffered further complications and this was added to by the problem of distance - we had by then moved some 120 miles up the A1 - this encouraged us to look for another specialist. Fortunately my father, who is a doctor, read about the work of Martin Lockwood in a medical journal and suggested that I went to see him at Addenbrooke's. The meeting was a turning point in my life and my husband and I came away with a tremendous feeling of hope, which has persisted over the years.

Since that time I have learnt a great deal about Wegener's and how it affects other people. During stays in hospital I have talked to other patients with Wegener's and been impressed by the strength and determination that carries them through the various ups and downs that meet them.

Wegener's is a part of my life in as much as it is there and sometimes has to be taken notice of. I have been very lucky. I was diagnosed early and given effective treatment. I have a wonderfully supportive family and friends, who I feel often suffer far more than I do. It is very difficult to stand by and watch your best friend suffering the effects of the disease and try to be supportive. The person that it is happening to knows what battles they have to fight and is able to concentrate on victory, but an involved observer can only guess and worry about the outcomes. They need support too.

I lead an incredibly full and rewarding life. I have a 'soon to be' beautiful home, two fantastic children, two totally loopy Jack Russells, a marvellous husband and a tailor-made job. I do have my black moments, but they don’t last long. As to my future aims and goals - well, I think that I would be very pleased to see my children settled and happy in their lives and I look forward to travelling and enjoying life to the full.