Autobiography

I was born a perfect baby in 1960 on 28th 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, which was the beginning of my lifelong relationship with hospitals. Eventually Diamond Blackfan Anaemia (DBA) was diagnosed, a blood disorder that is so rare that I was the first case the hospital had come across.

The fact that I was severely hard of hearing was only diagnosed when I was four.

At first the DBA was treated with steroids. The side-effects were considerable: I did not grow normally and I put on weight. Aged nine I was taken off steroids and became transfusion-dependent. About a year later I began treatment for iron overload, daily injections in the bum given by a nurse. I was barely getting rid of the iron I accumulated from the transfusions let alone the iron that was stored in my body. Later I was introduced to a pump which infused the medication slowly into the system through a needle inserted ino my stomach overnight.

After I left school I did a Foundation Course at St Martin's College of Art in London, and subsequently went to the Chelsea College of Art and Design where I did a BA in Graphics and was awarded a bursary by the Royal Society of Arts.

After my marriage in 1988 the haematology team at the Royal Free Hospital in Hampstead were trying out a new drug which could be taken orally to deal with iron overload. For five blissful months I took the oral medication, no needles and no pump. Then I got a cold and developed a high temperature. Apparently the drug had completely depleted my white blood cell count. I was treated for septicaemia in the intensive care unit at the Royal Free for several days. A month later I went home - back to the pump.

In my early thirties I began to suffer severe symptoms of depression, which took hold of me like bindweed. Over the next four years I became agoraphobic, wore only black, lost lots of weight and started to smoke as a rebellious gesture. I had turned from a quiet and somewhat passive personality into an angry one.

Some positive things emerged: I started to paint, keep a diary and write poetry. I created huge sculptural collages, using all the needles and equipment used during my transfusions. It was a massive relief to vent my frustrations into a piece of work, but each bout of creative frenzy left me exhausted.

One day I took an overdose, shaping the pills into flowers and swallowing them one by one. I was rushed to a mental health clinic where I was diagnosed with acute clinical depression.

I went home after eight weeks and gradually reduced my anti-depressant medication. I started painting again and felt more focused and relaxed. My feelings of anger and dreadful tension vanished.

It has not been easy to manage the combined problems of anaemia and deafness. I could not have coped without the support of my husband, my parents and a few close friends.

In 2003 my daughter's health began to deteriorate. In September she developed a haematoma which became infected and led to septicaemia. Although she put up a great fight she died on 4th January 2004 at St George's Hospital in London where she had been treated for fourteen years.

She was forty-three years old.
Joan Reinhardt