Janet Dean MP

Janet Dean had never heard of Lupus when her mother was diagnosed with it 25 years ago. Eight years later she discovered her husband also had the disease.

Here Janet, the Labour MP for Burton, talks about her experience of Lupus and how she became chairman of the first All Party Parliamentary Group dedicated to the condition

Janet says, “I first heard about Lupus in 1970 when my 59-year-old mother was diagnosed. Myself and all my family had to write it down when the doctor told us to remember what it was called, because none of us had ever heard of it.

“My mother was in hospital and she’d had all these symptoms like arthritis, chest problems, headaches, pleurisy and Reynaud’s Syndrome for many years.

“When she became very ill in 1970 it was because the Lupus had started attacking her heart and that’s why the diagnosis was made.”

“The charity LUPUS UK didn’t exist in 1970 and it was very difficult to find out anything about it. There wasn’t a lot of information available.

“My mother had always had health problems as long as I could remember. I was only 21 when we got the diagnosis but she’d had these symptoms most of my life. When we found out about Lupus it did make sense to me.

“My mum was so poorly at the time I wondered whether she was going to survive but thanks to the doctors she did and lived till she was 70.”

When Janet’s husband, Alan Dean, was also found to be suffering from Lupus following their marriage in 1968, it came as a shock.

“He was diagnosed in 1978, probably having had the condition since 1976, two years earlier.”

“Alan’s case was completely unrelated. It is very unusual for two members of a family who aren’t blood relations to develop it. He was only 30. When I found out it was a relief to some extent, because it meant the doctors could treat his condition, but we were very shocked.”

After being critically ill in hospital, Alan was given superb treatment and went on to go back to work and carry on as a local councillor.

“It was ten years after we’d got married, and we had an eight-year-old and a six-year-old. It changed my life in many ways. You can never predict how you’ll feel with Lupus so there were days when he was better and days when he wasn’t feeling so good.”

The ebb and flow of the disease affected the whole family.

“The unpredictability of the condition is one of the worst things about it; not knowing how your husband’s going to be in a day or a month’s time is hard, but you have to accept it and live with it.

The condition made him sensitive to the sun so we always went on holiday in this country rather than abroad. Some years he was too ill to take a holiday.”

Alan died in 1994.

Janet remembers. “He had a heart attack when he’d gone to see Crewe Alexandra play Rotherham in 1994. He’d been feeling less well and, in hindsight, it was a heart problem that was developing. Whether that was Lupus I’ll never know, though both Lupus and the treatment for it can cause heart problems. In the 11 years since Alan died, great progress has been made in understanding how it can affect the heart.”

Janet, now a National Patron of LUPUS UK as well as Chair of the All Party Parliamentary Group for Lupus, campaigns to make sure as many people know about the disease as possible, particularly during October, Lupus Awareness Month.