CIDP in europe
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April 19, 2007 at 12:20 pm
hello everybody! Im also new here. erika is my name and I live in Sweden. when I was 25, 2 years ago I got CIDP. Im sitting in my wheelchair and going with my Walkingchair. no medicin takes on me but now I try with the same medication like you have when you got cancer…
in Sweden we are just 2 people under 50 years older who have this decis.. I like to here some experiens from someone in my age with this decis. i think its realy hard to live with this pain in my body, I try to accept it and learn to live with it by I have to say its realy hard, dont you think?
my doktors on the Neurologic klinik here in Malmö university hospital asked me to write a book how it is to live with thís cronic decis and how it was to get this when you are “a grown man”. maybee same of you whants to help me a litlebit?
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April 19, 2007 at 3:26 pm
Hi, Erika, and welcome.
You might want to visit the UK GBS site at [url]www.gbs.org.uk[/url] as well as posting here. We have a number of members from Europe. I can’t think of any from Sweden at the moment, but we have some from Norway who are very active. (They’re also active here on the USA forums, so you may hear from them here.)
Best wishes in the battle,
Deb
London -
April 20, 2007 at 12:11 pm
aha thanks. i mean that because we are just 2 in sweden i want to here how it is to have this decis from somemore. i have my experience but is everybody that ill as I am? do you also eat cellcept? and “have vomings2/throw up the food?
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April 20, 2007 at 2:28 pm
Hello:
The Foundation has a chapter in Sweden. The liaison’s name is Claus Pedersen. If you register with the Foundation we can send you a packet of material that will include a chapter directory with his address and phone number. I hope this is helpful.
Barbara Katzman
Executive Director
GBS/CIDP Foundation International -
April 21, 2007 at 7:41 am
Welcome, Erika! I too am taking Cellcept and also had problems with nausea. Luckiy it went away. It’s difficult having this desease but having each other to lean on, talk over our problems and sometimes just to whine to helps. We’re all here for each other.
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April 22, 2007 at 10:21 am
Hej Erika,
I have just returned from the annual conference of the UK GBS Support group and have just noticed your entry whilst looking for something else. Välkommen till forumet!There is a small Support Group (Stödgrupp) in Sweden with a website/hemsida at [url]http://www.gbssverige.com/[/url]
Within that site are some pages on CIDP – Fakta om CIDP, including how CIDP develops/Hur uppstår CIDP? – Symptoms/symtom, Diagnosis/diagnos, prognosis/prognos, treatment/behandling and rehabilitation/rehabilitering.
Perhaps you would comment about the value of that information?I know one young lady some years younger than you in the Stockholm area with CIDP! Perhaps there are more?
The leader of the Swedish group is Claus Pedersen, a friend of ours! He lives to the NE of you in northern Skåne at Hästveda. I do not need to put contact details here as they are on the site. Claus will be interested to chat with you. I may ring him this evening to tell him of you.
You will see below this that I have a relation of CIDP. Ha det bra! Keep going Erika!:)
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May 3, 2007 at 1:17 pm
[QUOTE=kenspdn]Hej Erika,
I have just returned from the annual conference of the UK GBS Support group and have just noticed your entry whilst looking for something else. Välkommen till forumet!There is a small Support Group (Stödgrupp) in Sweden with a website/hemsida at [url]http://www.gbssverige.com/[/url]
Within that site are some pages on CIDP – Fakta om CIDP, including how CIDP develops/Hur uppstår CIDP? – Symptoms/symtom, Diagnosis/diagnos, prognosis/prognos, treatment/behandling and rehabilitation/rehabilitering.
Perhaps you would comment about the value of that information?I know one young lady some years younger than you in the Stockholm area with CIDP! Perhaps there are more?
The leader of the Swedish group is Claus Pedersen, a friend of ours! He lives to the NE of you in northern Skåne at Hästveda. I do not need to put contact details here as they are on the site. Claus will be interested to chat with you. I may ring him this evening to tell him of you.
You will see below this that I have a relation of CIDP. Ha det bra! Keep going Erika!:)[/QUOTE]
I have done an CIDP forum for sweden now 😀 [url]www.cidpochgbs.egetforum.se[/url] are the adress 😀 the Neurolog doctors in sweden have asked about it for along time and know I did one… kom och besök oss 😀
I also have an homepage : [url]www.erikacarlsen.se[/url] ( only in swedish) ..
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