Lise Kay - polio survivor

WHO/Malin Bring

Polio: a story forgotten

Millions of individuals all over the world are living with the after-effects of poliomyelitis (polio), but since the disease has been eradicated in all but 3 countries globally, it has almost been forgotten. The survivors have to struggle to get correct treatment, while the need to keep vaccinating new generations remains as vital as ever, if the fatal disease is to be held at bay.

Lise Kay is a part-time counsellor at the Danish Polio Society, a medical doctor and one of an estimated 10 000 polio survivors in Denmark. She was born in 1951 and contracted polio when she was 11 months old. “I had just learnt to stand upright, and my parents took a photo of me, where I appeared very pleased with my new skill. Two weeks later I was in hospital, totally paralysed,” she says. Lise Kay had no idea this photo existed until she discovered it some ten years ago. Her parents had hidden it, since the memories of her early accomplishment and subsequent illness were too painful.

“When I asked my mother what it was like for them that I got polio, all she could say, with her eyes full of tears, was that it was horrible. My father could talk about the hard facts of my illness, but never about the emotional side of things.”

Polio is a highly infectious, potentially crippling and sometimes even deadly disease. Mainly affecting young children, it is caused by a virus which is transmitted by person-to-person contact. The virus multiplies in the intestine of the infected person, from where it can invade the nervous system and cause paralysis. 1 in 200 infections leads to irreversible paralysis (usually in the legs). Among those paralysed, 5% to 10% die when their breathing muscles become immobilized.

One case among many

From July 1952 until April 1953, Denmark was plagued by a polio epidemic that infected 7 000 people, most of them children. More than 3 000 of them were paralysed, and around 350 died within a short period of time.  One of the children paralysed by the epidemic was Lise Kay. After being diagnosed with polio, 11-month-old Lise was isolated in hospital for three weeks. Her parents were given permission to look at her through a glass window when visiting, but seeing them made the little girl cry. A nurse then instructed them to stay away all together, so as not to upset their daughter.

Lise Kay remained in hospital for a year. When she returned home, with a weakened left leg and a brace on her right leg, she was just able to walk, thanks to the training and treatment she had received.

“One of my first memories is of falling flat on my face outside, and my mother telling me to get back up again without any help. ‘How on earth do I do that?’ I thought to myself, but she seemed to think I could do it, and I pulled myself up somehow. ‘Lise has to learn to cope by herself,’ my mother explained to a neighbour.”

For the following 15 years, Lise Kay went to a training centre 3 times a week to exercise and receive treatment. Walking up and down staircases was especially difficult for her, and had to be practiced extensively.“I went to training after school, which meant I never became a full member of the group of children playing outside in the street where we lived. I wasn’t bullied, but I knew I was different from the others, and they knew I couldn’t run after them if they teased me.”

The first polio vaccine came into use in 1955, and in 1955-1956 all schoolchildren in Denmark between the ages of 7 and 12 were vaccinated free of charge. Because of the vaccination programme, a polio epidemic that affected Denmark in 1961 turned out to be much smaller than expected.

Lise Kay was operated twice to make the tendons in her hip and right foot longer. When she was 16, she stopped going to the training centre, since the treatment was assessed to have reached a stable state. “I went out into the world like any other young person, with the exception that I couldn’t run very well or practice sports. I learnt how to ski though, and loved walking.”

Post-polio syndrome

She began to study medicine, married and had two children, “without giving polio a second thought,” she says. She specialized as a surgeon and urologist, but with time began having cramps and pains in her legs after a heavy duty at work. In 2008 she started using a cane, and was diagnosed with post-polio syndrome (PPS).

“Post polio means that a polio survivor develops new symptoms of weakness, fatigue and pain after a long period of stability. Awareness about the syndrome only started to grow in the late 1980s, and it is still a little known condition.”

Eventually Lise Kay was forced to apply for early retirement. Today, she works 12 hours a week as a counselor and medical researcher at the Polio Society. “I’m fine with my life now. There are still many things I would like to have done, but I believe the art of life is to make the best of what you have, and not waste energy on what you can’t have.”

Polio is not yet safely behind us

The main problem facing polio survivors, she feels, is the fact that doctors currently know very little about polio, since new cases are so rare. The last Danish occurrence of polio was registered in 1976. “Polio is a story forgotten, except for the survivors of the disease. Post-polio patients have lots of problems other than muscle weakness, and all of them need to be taken into account collectively. Unfortunately doctors are unaware of this.”

The fact that polio has been largely forgotten by the general public is another of Lise Kay’s concerns, since it may contribute to spreading skepticism about vaccines. “I can understand the skeptics to some extent, as the disease is not visible to them. But I always ask vaccine deniers to try to imagine how they would react if their child was paralysed and crippled for life. That is the possibility we are up against.”

The need to keep vaccinating new generations has not disappeared, even if the disease itself is not seen here today, Lise Kay points out.
“We are so close to eradicating polio. There were only 37 cases in the world last year. If we give up vaccinating now all will be lost.”