Follow one topic of conversation at a time
Welcome message from the Swedish EDS forum moderatorView: Translations (EN) Original language
[ Expand all ]
Monica | Member intro. | published 7 days ago | Originally written in English Welcome message from the Swedish EDS forum moderator
I am Monica, one of the moderators for this EDS forum. I do hope you will join us in order to share your knowledge and experiences across language barriers! I want to take a moment and introduce myself, and also give a few reasons for us in the Swedish EDS association joining the community.
Personally I have had symptoms of EDS since I was very young. No one understood why I had all these problems with hypermobility and with joints that already at young age looked radiologically old and worn. Like many of you I have struggled through life trying to get the correct diagnose. I had actually diagnosed myself with EDS 18 years prior to being able to find someone in the medical field who took my knowledge seriously and who could finally confirm the diagnose.
The Swedish EDS association was founded in 1998. I was previously a board member for many years and today my main commitment to the association is being the online communications manager. We have a website, a support forum, and a page on Facebook. However, EDS being the rare disorder it is, many questions and discussions would benefit from a broader perspective of knowledge and experiences. This is where the RareConnect online EDS community fits in very well.
We are very pleased to have received the invitation from Eurordis and NORD to join the forming of the RareConnect EDS community, and I hope that through this global support channel we can all prosper from learning, sharing and being able to communicate across borders.