Muskuloskeletalt Forum - 2/2007 (pdf) - Fagforum for ...

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From left to right: Lena Haugen, Liv Øines Andersen, Niels Gunnar Juel, Hanne Hove, Lars Remvig, Stense Farholt,
Lena Lande Wekre, Maritta Hellstrøm Pigg, Eva Holmberg, Birgit Juul-Kristensen, Erik Björk, Sirpa Kivirikko, Marja
Mikkelsson, Svend Rand-Hendriksen and Marie Hoff
Muskuloskeletalt Forum • 2 • 2007
Day 2. Pattern of referral to the centres in the Nordic
countries:
Denmark
– »EDS – difficult to diagnose! Review from Center
of Rare Diseases«, Århus 2004-2005 (Stense Farholt)
– Review from Clinic of Rare Handicaps, Copenhagen
(Hanne Hove) (Attachment 3)
Sweden
– Presentation of some Swedish patients – focus
on diagnostic problems, (H MD Erik Björk,
Karolinska sjukhuset)
The presentations of 3 patients show the dilemmas
we all meet when we work with this group of patients.
It was a nice discussion related to this presentation
Norway
– Presentation of some of the experiences we
have from our work at TRS. (Lena Lande Wekre)
Criteria for General Hypermobility, Hypermobility
Syndrome and EDS hypermobil type (Villefrance
criteria versus Brighton criteria).
- What do we use in the Nordic countries and what
will we recommend for the future?
Lars Remvig presented the criteria and some of his
experiences with this work. He has been interested
in joint hypermobility and possible related problems
for some years, and has written two review
articles, which are very descriptive, about this
theme, in the Danish journal Ugeskrift for Læger,
21st of November 2005, Hypermobilitas articulorum
og hypermobilitetssyndrom, I og II.
The participants discussed the different criteria,
and the problems we see according to the diagnostic
process. We agreed on trying to make a scheme
with the different sets of criteria and some other relevant
questions that can be used in all the Nordic
countries.
We did also discuss what we need to know about
pain related to hypermobility and EDS, and how we
can get the most relevant answers.
The expectations from patient organisations;
Nordic EDS - Conference 2007?
- The next Nordic conference for people with the
diagnosis of EDS and experts working with this
group, will take place in Norway the 26th and
27th of April 2007.
- Both Lars Remvig and Lena Lande Wekre will
give lectures on this conference.
- It is important that we discuss with and inform
the patient organisations in the Nordic countries.
Nordic collaboration in the future;
– Next Nordic Scientific Meeting in Copenhagen
2007/08?
We discussed when we should have the next meeting
– EULAR Copenhagen 2009
Lars Remvig informed about the conference.
Conclusion
During these two days we discussed how the work
with diagnostic, treatment and follow-up is organi-