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Slovenia - Norway

Ruth Bernssen Bø (board member DEBRA Norway), Polona Zakošek (president DEBRA Slovenia) and Karmen Cuk (EB nurse, DEBRA Slovenia) in front of Ruth's home in Nærbø
Ruth Bernssen Bø (board member DEBRA Norway), Polona Zakošek (president DEBRA Slovenia) and Karmen Cuk (EB nurse, DEBRA Slovenia) in front of Ruth's home in Nærbø

Two members of DEBRA Slovenia, President of the Association Polona Zakošek and nurse Karmen Čuk, travelled to Norway in May 2013 as a respond to a kind invitation of Ruth Bernssen Bø and DEBRA Norway. Our gathering is a beginning of a so-called "EB without borders exchange", an unofficial topic at DEBRA International Conference in Groningen in 2011.

Karmen and I stayed as guests at extremely pleasant Bernssen Bø family during the period from 14th to 21st May, and they accepted us as family members.

Ruth and her daughter KariAnna, both suffering from EBS, shared with us their experience of living with epidermolysis bullosa and demonstrated everyday care of blisters and wounds. It was interesting to see how Ruth uses Gehwol creme to reduce the possibility of blisters on her legs. She demonstrated the procedure during a successful climb on Preikestolen, a route that demands persistence and great deal of effort even from even healthy hikers. We will definitely transfer this successful experience to Slovenia.

Group of women around a table, handling wound care materials
We learn about dressings. Elisabeth Gabrielsen (nurse at Nor Engros), Polona Zakošek, Karmen Cuk and Judith Kristin Asche

A meeting with DEBRA Norway was organised on Thursday, May 16th. At the beginning, Elizabeth Gabrielsen from the company Nor Engros introduced wraps and other materials for wound care which are available in Norway. After lunch followed a second part, the presentation of some products and ways how and where people with EB apply them, accompanied by the description of an everyday life with EB. Judith Kristin Asche, president of DEBRA Norway, uses an electric bicycle which allows her to overcome short distances with virtually no effort. Judith allowed me a test ride and I can confirm that riding an electric bike is easy and actually fun.

The final part of the meeting was reserved for the presentation of both DEBRA associations. 

We bid our farewell in the hope to meet again at the DEBRA International conference in Rome in September. However, our stay in Norway did not finish there. Ruth and her family had prepared another four wonderful days for us that we spent getting to know the nature, culture and customs of South Western Norway.

We returned home with many new experiences and a lot of information that we plan to share with our members and friends. Incredible memories of Bernssen Bo family, Nærbø and Norway will remain - Thank you so much, Ruth Bernssen Bø!

Polona Zakošek, President Debra Slovenia Association

Karmen Cuk and Polona Zakošek (DEBRA Slovenia) on Pulpit Rock (Preikestolen), looking down from a cliff
Karmen Cuk and Polona Zakošek (DEBRA Slovenia) on Pulpit Rock (Preikestolen)

At the invitation of myself, two members from Debra Slovenia arrived on a cold day in May. They were accommodated in Bø, Jæren, as part of the family.

The program for the week was to exchange our experiences about EB, and also for them to get to know a little bit of the South Western coast of Norway.

They went to the Pulpit Rock and the Eigerøy lighthouse, made trips to the seaside and, most especially, they got to experience the ambience of our national day.

Debra Norway invited to a theme day, with this programme:

  • About bandages by nurse Elisabeth Gabrielsen, Nor Engros, at Forus
  • Lunch in Egon Restaurant, Stavanger
  • Information about Debra Slovenia by president Polona Zakošek, mother of a boy with EB, and Karmen Cuk, specialist EB-nurse;
    • They have 43 members: these are people with EB, carers and health professionals
    • Expenses for bandages and supplies are covered by insurance and sponsors
    • They get a room free of charge, to meet with a wholesale company that supplies bandages
    • Information meetings take place twice a year
    • They send out information via e-mail and regular mail
    • They have volunteers who go on visits to EB patients twice a month, to help with whatever is needed
    • Debra staff help with the purchase of bandages and equipment
    • Debra Slovenia organises excursions and similar families living with EBI

Information about Debra Norway was given by Judith Kristin Asche, EB patient and leader of DEBRA Norway, and Ruth Bernssen Bø, EB patient and member of the board of DEBRA Norway: About our own experiences with EB, products and dressings we use, and things which make the days easier for us as EB patients.

Even though we live in two completely different countries, there are many similarities in how we think. We have a common desire for professional advice, and we all need help from doctors, dentists, nutritionists, plastic surgeons, social workers and nurses.

Ruth Bernssen Bø, EB patient and member of the board of DEBRA Norway

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