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New Nordic Network for Women with Spinal Cord Injuries

A majority of people with spinal cord injuries are men. As a result, the problems specific to women with these injuries are often overlooked at conferences and in research. Erika Nilsson from the Spinalis Foundation is coordinating a new Nordic project for women with spinal cord injuries.

There is a great need for knowledge and sharing of experiences, says Nilsson, who has started activities for women with spinal cord injuries in Sweden. The Nordic co-operation project, which is funded by Nordic Welfare, was initiated this spring with a meeting in Copenhagen.

What are you going to do in the project?

Erika Nilsson. Photo: Ervin Katai
 Erika Nilsson. Photo: Ervin Katai

We have just started and our plans are not complete yet. But we’re hoping to do a workshop on issues specific to women at the Nordic spinal cord injury conference in Trondheim in September. We have also talked about putting together a course. We want to encourage research of relevance to our group, but also support newly injured women and point to the possibilities of living a good and active life even you have been put in a wheelchair.’

What kind of knowledge is missing today?
‘We need to make people more knowledgeable about pregnancies and giving birth. Some women are putting off having children. They don’t know whether their paralysed bodies will be able to deliver a baby. Healthcare professionals lack knowledge in this area as well. A group I’m part of has launched a website about becoming and being a parent as a person with a spinal cord injury. The project has received a lot of attention in our neighbour countries. We also need to address issues related to sexuality and contraceptives. For example, the risk of getting a blood clot increases if you’re in a wheelchair and take birth control pills.’

Why is Nordic co-operation needed?
‘The low number of women with spinal cord injuries makes it important to co-operate across national boundaries. Only 20 per cent of those who suffer a spinal cord injury are women. We have a lot to gain from reaching out to each other. Working together will make us stronger and more influential.’

What happens next?
‘The Nordic network will meet after the summer in Trondheim. Then we’ll talk about what to do next. We have also started a Facebook group for Nordic women with spinal cord injuries. I have worked with these issues for 12 years and I see an obvious need for meeting places for women. If you’re newly injured, it’s easy to think your life is over. In those situations it can be valuable to talk to other people who have lived with their injuries for a long time.’

Updated 3 May 2020