“It has been such an adventure. Not in my wildest dreams could I have imagined I’d publish a book about it all”, the author Anita Kåss says.
Anita Kåss is a scientist who has done what many dream of doing: she has added to our knowledge about one of the great mysteries of medicine. Now, the story of her life and work, co-authored with the journalist Jørgen Jelstad, is published under the title Mamma er en gåte ("The mystery of my mother", to be published in English by Greystone Books, Canada) at the publishing house Cappelen Damm in Oslo (2018). Kåss had a clear idea of her intentions:
“I wanted to show how science became meshed into my own life from childhood onwards. And, also, how my research into new ways to treat patients grew into something of a detective story, compete with clues that finally added up to an answer. When the history of a research project is seen to interact with the real events of someone’s personal life, the whole becomes more exciting.”
It all began in her childhood
Kåss grew up in Liverpool and that is where her own story starts. In her childhood, her mind was almost entirely focused on her mother who suffered from rheumatism and died prematurely:
“My mother was ill all the time and I am sure that having had to care for her every day as I grew up made a deep, lasting impression on me. During her funeral, I felt so awkward because my own reaction to her death was nothing but relief that she had finally been allowed escape. It made it hard for me to be with people who grieved for her. Afterwards, I looked up ‘arthritis’ and ‘’rheumatism’ in the encyclopaedia. I have never before expressed what I felt in words. Now, working on my book has helped to bring her closer to me.”
It was easy for Kåss to choose her career: it seemed self-evident that she should carry on with science and then study rheumatism and other autoimmune diseases. She met her husband at medical school.
“He was actually my mentor when I was a student,” Kåss explains. “By the time we decided to move to Norway, we had a little daughter.” Because her husband came from Porsgrunn, Kåss ended up in its Bethany Hospital, where she started to study for her doctorate.
Thinking outside the box
Autoimmune diseases include many apparently unrelated conditions that are ultimately caused by the immune system, which normally defends the body against invading bacteria and viruses but can erroneously start attacking cells that are part of organs in the body. There are more than a hundred different autoimmune diseases; for instance, psoriasis and multiple sclerosis both belong in the group. World-wide, roughly 1 in every 20 people has some form of autoimmune disease and the incidence is growing. Before Kåss started her cutting-edge research project, relatively few scientists had investigated the role of some of the key sex hormones in autoimmune conditions.
“One of the reasons why these particular hormones have not been more thoroughly researched in this context is that autoimmune diseases predominantly affect middle-aged women. But we did know that the affected women often get better during pregnancy and, also, that the disease often flares up in the period immediately after giving birth. These were observations that made me curious to find out if any of the relevant hormones might be important.”
“Of course, other researchers had taken note of these facts. For instance, the hormone cortisone was isolated from a gland extract found to be effective in the treatment of rheumatoid arthritis. Though after the revolutionary discovery of the cortisone, research into the role of hormones in autoimmune disease slowed down.”
An unsexy field of study?
“Since the discovery of cortisone, there hasn’t been any exciting work done on the role of hormones in autoimmune disease. Somehow, the subject was thought ‘unsexy’. But I thought it mattered and wanted to take a closer look. People felt I was being ‘old-fashioned’, and that other research topics were ‘hotter’.”
Kåss followed a trail that few of her colleagues had considered fruitful. Carrying patiently on, she tested an existing drug that acts as antagonist to sex hormone release and found it had great promise as a treatment for rheumatism:
“Strangely enough, no one had checked this before. We established that certain sex hormones were particularly potent. Once we had the data it all fell into place. These hormones are secreted less during pregnancy, and more during the period after giving birth and during the menopause. It fitted in very neatly – and so the ball started rolling.
At the time of her discovery, Anita Kåss was just twenty-five years old. The head of the laboratory advised her to submit a paper as a contribution to the international rheumatology congress. Among the many hundreds of submissions, hers was selected. She was one of the fifteen scientists invited to present their results.
“It was such fabulous news. I had never been to a conference before but, there I was, offered the chance to speak at the largest rheumatology congress in the world. It gave me a boost, and I carried on investigating GnRH-antagonists in a clinical trial.”
The trial involved 104 patients with rheumatoid arthritis. The group of subjects whoh received GnRH-antagonist medication improved overall, and apparently experienced no serious side-effects.
“Altogether, it has been an unbelievable journey,” Kåss says about the thirteen years that have passed since her discovery.
The idea was sold for 800 million NOK
This new property of the GnRH-antagonist led inevitably to negotiations with international pharmaceutical companies about licensing rights. The agreement with a Japanese company entailed a payment of the dizzying sum 800 million Norwegian kroner (93 million US dollars). Kåss isn’t overexcited:
“Scientists have to keep their cool in situations like this. The one thing I cared about was to settle on an agreement that would allow the experimental work to continue so that, one day, we would be ready to prescribe a tried and tested medicine.”
She doesn’t give herself time to reflect on what she has already done to improve the quality of life of many patients:
“I don’t want to talk this up. Becoming too keen on one’s own importance is dangerous, and I have to be cautious and objective about our project and its future. To this day, I hold back from believing that people actually get better. A typical talk with my patients often ends with them exclaiming: “Anita, you’ve simply got to trust me. I do feel so much better now,” Kåss says with a smile.
Like a detective story
“I want my readers to realise how passionate I am about science. And to understand why I can get up in the middle of the night and start working – it’s because research is so exciting,” Kåss replies to a question about her expectations for the book.
Mamma er en gåte is a popular science story about an exploration of our immune system. Still, Kåss hopes it will do more than inform about autoimmune conditions.
“What I truly hope for my book is that its readers will feel inspired to follow their dreams. This has been a great adventure for me. I never imagined in my wildest dreams that I’d publish a book. But I do hope that reading it will teach people a lot. I think we have created a beautiful explanation of how the immune system can work both as an active defence against invading bacteria and viruses, and as a destructive force when it mistakenly turns against its own body. And I hope we have succeeded in making the narrative read like a detective story. The readers won’t know quite what will happen in the end and new clues turn up all the time. I think it makes the book fun to read.”
Translated from the Norwegian by Anna Paterson
For more information
Cappelen Damm: Mamma er en gåte
Cappelen Damm Agency: Anita Kåss
Books from Norway: Anita Kåss