'My art helped me cope with illness'

By Jane Elliott
BBC News health reporter

Alex fought a lifelong battle with ill health

"I was born a perfect baby in 1960 on 28 July. Two months later I became limp and pale and went off my feed.

"I was rushed to Great Ormond Street Hospital for Children in London with a haemoglobin blood count of two.

"That was the beginning of my lifelong relationship with hospital."

These are the words of artist Alexandra Reinhardt, who died last year aged 43 after spending her lifetime battling the rare blood condition Diamond Blackfan Anaemia (DBA).

It's amazing what you get used to Alexandra Reinhardt

This month Paintings in Hospitals will host the first major exhibition of the work of this extraordinary woman.

DBA is a form of anaemia where the bone marrow produces little or no red blood cells, which transport oxygen around the body.

Alexandra's mother, Joan, admits that, had her daughter been born today, the family would have been looking into the issue of 'designer babies' to try to cure her.

The technology now exists to select an embryo that will provide a perfect match for a stem cell transplant.

A British boy, Charlie Whitaker, who also has DBA, is a recent beneficiary, receiving cord blood from a sibling whose embryo was genetically screened.

But Alexandra was born too early for any of this.

Blood transfusions

She was the first patient to be diagnosed with the condition at Great Ormond Street and from the age of nine became dependent on regular blood transfusions.

But with each transfusion her body began to accumulate excess iron and she needed overnight infusions to remove it from her system.

Talking before her death about her experiences, she said: "I can remember being absolutely horrified that I would have to insert a needle into my stomach which was to be left eight to 10 hours overnight while the medication infused slowly into the system.

"It's amazing what you get used to. There was no cream to anaesthetise the skin prior to the infusion jab. That came later."

Alex used medical equipment to create collages

At 28, she married and started to take an oral drug to deal with her iron overload, but that had terrible side effects and completely depleted her white blood cell count.

Her immune system was 'at rock bottom' and she spent several days in intensive care with septicaemia.

She was put back on the pump.

Depression

It was a massive relief to vent my frustrations into a piece of work Alexandra Reinhardt

At the age of 32, the strains of the condition started to take its toll on her mental health and she got severely depressed.

She became agoraphobic and lost weight. Doctors prescribed Prozac.

But through this bleak period she started to paint. Although she had done an arts degree, it was her worsening illness that proved the spur for her art. As well as painting she wrote poetry and kept a diary.

She wrote: "I created huge sculptural collages, using all the needles and equipment that I had to endure while I was having my transfusions.

"It was a massive relief to vent my frustrations into a piece of work. However I would be exhausted after each bout of creative frenzy."

Then she took an overdose and spent eight weeks in the Priory clinic being treated for acute clinical depression.

In 2002 her platelet count started to drop and she developed a serious haematoma (a painful accumulation of blood) and because of the iron overload her liver failed. She spent two months in hospital.

She recovered, but was very frail. The next year she developed another haematoma, which became infected and led to septicaemia.

One of Alex's paintings

This time she could not fight it and died on 4 January 2004.

Now the work, which she started initially as therapy, is being shown at London's Menier Gallery in association with Paintings in Hospitals.

Her sister Veronica said hospitals had played a major influence in her sister's work.

"Her pictures are often dark and disturbing, littered with the debris of the endless medical interventions and her own self: syringes, blood bags and cigarette ends gloomily cemented together - stark statements of her anger and distress.

"Yet even in this dark period wit and humour shine through."

A form of therapy

Her mother agreed: "Her painting started as a sort of therapy for herself, but as the condition became a bit more acute, as it does when you get a bit older, she got terribly angry and upset and the painting represents the various needs at the time.

"When she was at her weakest towards the end she did wonderful flower canvases and butterflies.

"At the end her pictures were very light and bright with a note of peace, but the journey there was very dramatic towards the end.

"She managed to gather the energy to do these very large canvases, but she did not have the confidence to do a show.

"She did live with BDA for 43 years. She was a gutsy, brave girl, but it was very tough.

"She had a sense of humour and she was very attractive, but the combination of her BDA and her deafness was very hard."

Dr Sarah Ball, consultant paediatric haematologist at St George's Hospital, Tooting, said that two thirds of child patients will, unlike Alexandra, respond to steroid treatment and not need the transfusions.

"Then what you do is find the minimum dose they need without transfusion," he said.

"The lucky ones need a minimum dose and can be mildly anaemic. The problems are the ones who need a big dose or who don't respond. They go on to transfusions.

"Eventually about 40-50% of the patients on the registry are on long-term transfusion.

"That once-a-month transfusion is not a problem, the problem tends to come once they have been having transfusions for about six months to a year and their iron levels build up.

"With each pint of blood you get the iron with it and your body hangs on to it. The iron storage gets supersaturated and it gets stored in the tissues."

It then has to be removed from the system.

She said that the prognosis was poor for patients whose iron levels could not be regulated.

"Alexandra Reinhardt, An Extraordinary Life" will be running until 25 February at the Menier Gallery, at the Menier Chocolate Factory, 51-53 Southwark Street, London SE1 1TE.