Dr John Cater, from Fife, and HD specialist nurse Nicola Johns, worked together on this fascinating account of John’s life. From an internment camp in Shanghai during WW2 to a medical career as a consultant paediatrician, John was diagnosed with HD nearly 15 years ago. Here, in his own words, John tells his story:

 On 4 April 1943, on my fifth birthday, I was interned in the Lunghua Civilian Assembly Centre, Shanghai. My father, mother and two sisters were interned with me and together we remained in the prisoner of war camp for 28 months, until our release in August 1945.

 As a very young boy, I was not frightened at the time. I thought the Japanese would treat us ‘normally’ and I would be able to deal with my changed life. It would be an adventure. However, as the harsh reality hit home, I found it more and more difficult to cope.

 The main horror for me was the starvation. We would be offered ‘congee’, a very runny, porridge-like substance, every morning. If we did not eat this, we got nothing. Disgusting as it was, I tolerated it, however my sisters, did not. The sheer deprivation of this lack of food had an immense impact on my life and rather than go to the camp school, I would spend prolonged periods just lying in my bed. 

I developed an umbilical hernia. War causes complete breakdown of food supplies and consequent starvation. Throughout my life, medical doctors have questioned me a lot about my time in the camp, wondering what I have gone through. I feel this has had a detrimental impact on me and, as a consequence, I have never really opened up about this horrific experience.

Fortunately, my parents were both medical doctors. My father set up a medical school within the camp and pilfered bodies from the graves and paddy fields to build a skeleton for training purposes. Because of their academic backgrounds, both having studied at Cambridge, my father got on very well with the Commandant and felt because of this, our family was treated slightly better.

I witnessed a number of war atrocities. I saw fellow prisoners being ill-treated, taking a beating and suffering immense pain. Families were all crammed together in accommodation ‘blocks’. After our release from the camp, we went back to our home – and carried on with life as normal. I take my interest in medicine from my parents and worked as a Consultant Paediatrician for 20 years. I believe I am a caring person, and I have three daughters and three granddaughters.

I’ve never really known where the family history of Huntington’s disease comes from. I think it iss from my mother’s side, but I’m not sure. It was a shock to receive a positive test result when I was in my late sixties. I knew that I was having some difficulties and had given up work at the age of 59. In 2007, I became a client of the SHA, and have engaged well over the past 12 years.

Sadly, my wife and I had a marriage break-up four years ago after 51 years of marriage. I wanted to live on my own and make my own way in life. I wanted to decide what to have for my tea and whether or not to have a long lie at the weekend. I have a small support package and I manage very well. I’m happy and enjoy life. My daughters all live abroad and they visit as often as they can.

At the age of 81, I’ve joined new clubs and my social life is packed. I go to an art club twice a week and many of my paintings are on display in my home. I believe that my father and other prisoners kept a record of their time in the camp and their written account is now held at the Royal College of Physicians, Edinburgh.