Contact

Self-help groups

Sha­ring in a group of peo­p­le who have simi­lar expe­ri­en­ces can be of gre­at bene­fit to peo­p­le with lupus ery­the­ma­to­sus for seve­ral reasons:

Sup­port and under­stan­ding: In a self-help group, tho­se affec­ted can meet peo­p­le who under­stand their chal­lenges and expe­ri­en­ces. The fee­ling of not being alo­ne can be enorm­ously com­fort­ing and crea­te a strong sen­se of com­mu­ni­ty and understanding. 

A self-help group helps peo­p­le affec­ted by lupus feel sup­port­ed and bet­ter infor­med. The regu­lar mee­tings can help you cope bet­ter with ever­y­day life with the dise­a­se and to bet­ter reco­g­ni­se and com­mu­ni­ca­te your own needs. 

Infor­ma­ti­on and resour­ces: In a self-help group, mem­bers can share infor­ma­ti­on about their dai­ly life with lupus, their coping stra­te­gies and resour­ces. They can also talk about their expe­ri­en­ces with the­ra­pies. Howe­ver, no advice is ever given—certainly not medi­cal tre­at­ment recom­men­da­ti­ons. Group mem­bers are peo­p­le affec­ted, not trea­ting physicians. 

Clear rules in a self-help group: The lupus self-help groups are sup­port­ed by lupus suis­se. Group lea­ders are intro­du­ced to their role. They are encou­ra­ged to crea­te a char­ter for their group with clear rules, first and fore­most mutu­al respect. Group lea­ders learn and teach acti­ve listening. They always lead the group with good­will. Every mem­ber should feel wel­co­me, heard and understood. 

Emo­tio­nal sup­port: Sha­ring expe­ri­en­ces and emo­ti­ons in a lupus self-help group can help redu­ce stress. Being a mem­ber of such a group redu­ces iso­la­ti­on and the fee­ling of being hel­p­less­ly at the mer­cy of the dise­a­se. The soli­da­ri­ty and under­stan­ding of all mem­bers pro­vi­des hope, rene­wed cou­ra­ge to live and energy. 

Orga­ni­sa­ti­on

Our self-help groups orga­ni­se them­sel­ves inde­pendent­ly. Each group mem­ber has equal rights and shares responsibility. 

Mem­bers of a self-help group recei­ve sup­port and are them­sel­ves an important source of sup­port for the other mem­bers. Each mem­ber is gene­ral­ly wil­ling to con­tri­bu­te to the group. Respect is para­mount. Acti­ve listening is practised. 

The self-help group is not exclu­si­ve­ly about lupus; other ever­y­day topics can also be dis­cus­sed, as lupus often affects all are­as of life.

Cont­act the regio­nal group lea­der in your regi­on for fur­ther infor­ma­ti­on: when, whe­re and how the group meets, how many mem­bers it has, whe­ther it orga­nis­es excur­si­ons or other events, etc. 

Requi­re­ment for joi­ning a self-help group sup­port­ed by lupus suis­se: You must be a mem­ber of lupus suis­se. Howe­ver, the self-help groups gene­ral­ly also accept non-mem­bers for an initi­al, non-bin­ding par­ti­ci­pa­ti­on in a self-help group. 

New groups

Is the­re not yet a lupus self-help group in your regi­on? You can start your own group at any time. lupus suis­se will be hap­py to sup­port you and will also pro­vi­de the appro­pria­te trai­ning and con­ti­nuing edu­ca­ti­on. Plea­se cont­act the secre­ta­ri­at.

Groups

Here you will find more detail­ed infor­ma­ti­on about the indi­vi­du­al regio­nal groups.

Basel

Bern

Grau­bün­den

Solo­thurn

Tici­no

Vaud

Valais

Zurich

Cont­act

Take the oppor­tu­ni­ty to call your regio­nal group lea­der to join one of the next mee­tings. She looks for­ward to hea­ring from you. 

It is worth it, becau­se soli­da­ri­ty can help you a gre­at deal in coping with lupus.

Our com­mit­ment to lupus suis­se is vol­un­t­a­ry. Some of us are affec­ted by lupus our­sel­ves. We do our best to respond to que­sti­ons and con­cerns as quick­ly as pos­si­ble. If we are unable to do so imme­dia­te­ly and as quick­ly as expec­ted, we ask for your understanding. 

Cont­act details are reser­ved for members.

Infor­ma­ti­on about mem­ber­ship and its bene­fits can be found here:

Beco­me a Member