I-Multiple Sclerosis (MS) yisifo esiyinkimbinkimbi segazi esithinta ubuchopho nentambo yomgogodla, okuholele ezinkomba ezifana nokukhathala okukhulu, izinzwa ezibuhlungu, ukukhubazeka, ukucindezeleka, kanye nezinkinga zesibindi kanye nesibindi. Ngeshwa, naphezu kokucwaninga okwanele, ochwepheshe abatholakali okwamanje "kungani" ngemuva kwe-MS-futhi lokhu kuphazamiseka okuzungezile imbangela yayo kwenze kube nzima ukuthola ukwelashwa.
Lokho kusho ukuthi izindaba ezinhle ukuthi ngokucwaninga okukhulu, ukuqwashisa nokufundisa, abantu abaningi baphila kahle nge-MS kanti inqubo yabo yesifo iye yancipha ngokuvela kwezifo ezintsha eziningana eziguqula izifo . Noma kunjalo, naphezu kwale ntuthuko emangalisayo, umsebenzi omningi usadinga ukwenziwa. Nazi izinhlangano ezihola ezihlala zibophezele ekudaleni impilo engcono kulabo abane-MS futhi ekugcineni bathole ukwelashwa kwalesi sifo esilimazayo futhi esingalindelekile.
I-National Multiple Sclerosis Society
I-National MS Society (NMSS) yasungulwa ngo-1946 futhi isekelwe eNew York City, nakuba inezahluko ezahlakazeka kulo lonke izwe. Umgomo wayo ukuphela kwe-MS. Kodwa, okwamanje, le nhlangano evelele engenzi inzuzo ihlose ukusiza abantu baphile kahle lesi sifo ngokuxhasa ngemali ucwaningo, ukuhlinzeka ngemfundo yamuva, ukukhulisa umphakathi, nokudala imiphakathi nezinhlelo ezivumela abantu abane-MS nabathandekayo babo ukuxhuma nokuthuthukisa ikhwalithi yabo yokuphila.
Faka iqhaza
Umgomo omkhulu we-NMSS ukukhuthaza ukubumbana phakathi kwabantu abane-MS kanye namalungu omndeni wabo, abangani, kanye nabasebenza nabo-indlela yeqembu yokuthola ukwelashwa, okushoyo. Kunezinhlobo zezenzakalo ezixhasiwe yi-NMSS ezweni lonke ukuthi wena nabathandekayo bakho bangabandakanyeka nabo, njengokungenela iqhaza le-Walk MS noma i-Bike MS umcimbi noma ngokuba yi-MS Activist.
Izinsiza
Izinhlelo zokucwaninga nokufundisa ziyizinsiza ezimbili ezinkulu ze-NMSS. Eqinisweni, umphakathi utshale imali engaphezu kuka-$ 974 million ekucwaningweni kuze kube yimanje futhi ucwaninga kakhulu ekusekeleni ucwaningo olungathandeki nje kuphela, kodwa lokho kuzoshintsha isimo se-MS ukuze sibe ngcono.
Ezinye izinhlelo zokucwaninga ezithakazelisayo ezisekelwa yi-NMSS zihlanganisa uphenyo ngendima yokudla nokudla okunomsoco ku-MS, stem cell therapy, nokuthi indlela yesiguli ye - myelin ingalungiswa kanjani ukuze ubuyisele umsebenzi wesisindo. Ngaphandle kwezinhlelo zocwaningo, ezinye izinsiza ezibalulekile ezinikezwa yi-NMSS zihlanganisa umphakathi wokusekela inthanethi kanye ne-MS Connection Blog.
I-Multiple Sclerosis Association of America
I-Multiple Sclerosis Association of America (MSAA) yinhlangano kazwelonke engenzi nzuzo eyasungulwa ngo-1970. Umgomo oyinhloko ukuhlinzeka ngezinsizakalo nokusekela umphakathi wakwa-MS.
Faka iqhaza
Enye indlela yokuzibandakanya ne-MSAA iwukuba "ilunga lesigcawu," okusho ukuthi usakaze igama mayelana nokuSwaya kwe-MS fundraiser nokukhulisa nge-MS. Lokhu kungenziwa cishe (ngokusebenzisa ezokuxhumana nabantu) noma ngokukhuluma namabhizinisi omphakathi nezinhlangano.
Izinsiza
I-website ye-MSAA inomusa futhi inikeza izinto eziningi zemfundo. Imithombo eyodwa ehamba phambili yindlela yabo yokuguqula impilo yansuku zonke kuya ku- S yikhombisa ividiyo eveza ukuthi i-MSAA ibasiza kanjani labo abahlala ne-MS (ngokwesibonelo, ukuhlinzeka ngesidlo sokupholisa owesifazane ogama lakhe lingumama wokushisa).
Futhi, imithombo ewusizo ikakhulukazi uhlelo lokusebenza lwamafoni wami lwe-MS My, olukhululekile kubantu abane-MS nabalingani babo bokunakekelwa. Lolu hlelo lokusebenza olusha luvumela abantu ukuba balandele umsebenzi wabo wesifo se-MS, ukugcina ulwazi lwezempilo, ukudala imibiko mayelana nezimpawu zabo zansuku zonke, futhi ngisho nokuxhuma ngokuvikelekile eqenjini labo lokunakekela.
Iprojekthi Ephuthumayo Yokuphulukisa I-Multiple Sclerosis
Njengezinhlangano ezingezona inzuzo ezisekelwe isiguli, umkhankaso weProjekthi Ephuthumayo Yokuphulukisa i-MS (ACP) ukuqhuba ngokushesha imizamo yokucwaninga yokuthola ukwelashwa.
Faka iqhaza
Ngaphandle kweminikelo, kunezinye izindlela ezimbalwa zokuzibandakanya kuleli qembu kuhlanganise:
- Ukufaka isicelo kuMary J. Szczepanski "Ungayeki" MS Scholarship
- Ukuqala umkhankaso wokubhala wencwadi
- Ukusingatha i-ACP fundraiser
Izinsiza
Kuyathakazelisa ukuthi i-ACP iqukethe iqoqo elikhulu (amasu angaphezu kwezingu-3 000) zegazi kanye nedatha kubantu abahlala ne-MS nezinye izifo zokudonswa phansi. Abacwaningi bangasebenzisa le datha bese bebuyisela imiphumela ku-ACP ezifundweni zabo. Inhloso yalesi sizinda esabelwe yilabo abenza kahle kakhulu futhi ngokushesha bathola ukwelashwa ku-MS.
Futhi, kukhona izinsiza ze-ACP ezikhuthaza ukubambisana nokuhlangana-ndawonye kwamanye emphakathini we-MS, kufaka phakathi i-MS Discovery Forum kanye ne-MS Minority Research Network.
I-MS Focus: I-Multiple Sclerosis Foundation
I-Multiple Sclerosis Foundation (MSF) yasungulwa ngo-1986. Ukugxila kokuqala kwalenhlangano engeyona inzuzo kwakuwukunikeza imfundo kubantu abane-MS ngokuthuthukisa ikhwalithi yabo yokuphila. Ngokuhamba kwesikhathi, i-MSF nayo yaqala ukuhlinzeka ngezinsizakalo kubantu abane-MS nabathandekayo babo, ngaphezu kokuletha izinsiza zemfundo eziphezulu.
Faka iqhaza
Enye indlela ejabulisayo yokuzibandakanya ne-MS Focus (uma une-MS) ukucabangela ukuba yi-MS Focus Ambassador. Kuloluhlelo, izinxusa ziphakamisa ukuqwashisa nge-MS emiphakathini yazo, zihlela futhi ziholele ama-fundraisers, futhi zisiza ukuxhumanisa nalabo abane-MS namaqembu abo okunakekelwa ngezinsizakalo ezinikezwe yi-MS Focus. Abantu abanentshisekelo kulolu hlelo kumele baqale basebenzise futhi, uma bamukelekile, bazothola ukuqeqeshwa okukhethekile ukuze bafundise ngendima yabo.
Enye indlela yokuzibandakanya (noma ngabe unayo i-MS noma cha) ukucela isitifiketi sokuqwashisa esivela ku-MS Focus ngesikhathi seNational MS Education and Awareness Month in March. Le kithala yamahhala ithunyelwe ekhaya lakho futhi liqukethe izinto zokufundisa ezizosiza ukuqwashisa nge-MS emphakathini wakho.
Izinsiza
I-MSF inikeza izinsiza eziningi zemfundo, kufaka phakathi umagazini we-MS Focus, izinhlelo zomsindo, nama-workshops angaphakathi komuntu. Ibuye ibasize labo abane-MS baphile kahle ngesifo ngokunikeza amaqembu asekelayo kanye namakilasi okuqeqesha okuxhaswa kancane kancane njenge-yoga, tai chi, ukuqina kwamanzi, ukugibela amahhashi, nezinhlelo ze-bowling.
Ngaphezu kwalokho, i-Medical Fitness Network ingumlingani we-Multiple Sclerosis Foundation. Le nethiwekhi iyi-directory yamahhala kazwelonke e-intanethi evumela abantu abane-MS ukuba bafune ubuchwepheshe kanye nochwepheshe bezempilo endaweni yabo.
Ungenza MS
Ungenza i-MS, ngokusemthethweni i-Jimmie Heuga Center ye-Multiple Sclerosis, inhlangano kazwelonke engeyona inzuzo eyenza abantu abane-MS bazibheke kanye nempilo yabo ngaphezu kwesifo sabo. Lesi sisekelo sakhiwa ngo-1984 yi-Olympic skier Jimmie Heuga, otholakala eneneminyaka engama-26 ubudala. Ufilosofi wakhe wezempilo "wonke umuntu", okubandakanya ukuthuthukisa impilo engokwenyama kuphela kodwa nokuphila komuntu kwengqondo nokuphila kahle, kuyinto mission oyinhloko ye-Can Do MS.
Faka iqhaza
Izindlela eziyinhloko zokuzibandakanya ne-Can Do MS ukuphatha umcimbi wakho wokuqoqa imali, ukugqugquzela izinhlelo zokufundisa eziyisisekelo ezigxila ekuzivocavoca, ukudla okunomsoco, nokuphathwa kwezimpawu, noma ukunikela ngesisekelo ngqo noma esikhwameni sikaJimmy Huega Scholarship.
Izinsiza
Ungenza i-MS inikeza ama-webinars ngezihloko ezihlukahlukene ze-MS, njengezimangalo zokukhubazeka, izinkinga zomshuwalense, izinselele zokunakekelwa nokukhathazeka, nokuphila no-MS ubuhlungu nokucindezeleka. Ibuye inikeze izinhlelo eziyingqayizivele zezemfundo zabantu, njengezinsuku ezimbili ze-TAKE CHARGE lapho abantu abane-MS bexhumana nabanye, abalingani babo bokusekela, kanye nabasebenzi bezokwelapha bezazi ze-MS ngenkathi babelana nakho okuhlangenwe nakho kanye nokufunda ngemikhuba yokuphila enempilo.
I-Rocky Mountain MS Center
Umgomo we-Rocky Mountain MS Centre ukukhuthaza abantu nge-MS nokuhlinzeka ngezinsizakalo ezihlukile kulabo abaphila nesimo. Lesi sikhungo siseNyuvesi yaseColorado, okuyinto yezinhlelo eziningi zokucwaninga ze-MS emhlabeni jikelele.
Faka iqhaza
Uma uhlala ngaphandle kweColorado, ungaba umlingani ohlala njalo, lapho wenza khona imali ekhokhwa njalo ngenyanga ukusekela isikhungo. Noma ungacabangela ukunikela ngemoto yakho endala kumoto yezinsiza.
Uma uhlala eColorado, ungakha ithimba lakho lokugijima futhi uzibandakanye nama-Multiple Summits for MS, ukuya kwi-gala yonyaka, noma ube yilungu le-Young Professionals Network.
Izinsiza
I-Rocky Mountain MS Centre inikeza izinto eziningi zemfundo, hhayi kuphela kulabo abane-MS, kodwa ngemindeni yabo nabanakekeli. Imithombo emibili ephawulekayo ihlanganisa:
- I-Infor MS: Umagazini wamahhala, wekota ngamunye otholakala ekuphrintiwe noma edijithali enikeza ukwaziswa kwamuva ku-MS kanye nokwaziswa kwengqondo kwalabo abahlala ne-MS
- Izindaba ze-eMS: I-newsletter ehlinzeka ukuhlolwa kokuhlolwa okuhlobene ne-MS kanye nemiphumela
I-Rocky Mountain MS Centre inikeza nemithi yokwelapha ehambisanayo, njenge-hydrotherapy, i-Ai Chi (e-Water-Based Tai Chi), kanye nokweluleka, ukuhlolwa kokukhubazeka, amakhadi we-MS, kanye nohlelo lomuntu omdala wokuvuselela umsizi.
Izwi elivela
I-MS ithinta abantu ngokukhethekile, yingakho ukubhekana nesifo nokuphatha izimpawu zayo kungaba umsebenzi oyinkimbinkimbi. Ngamanye amazwi, akekho abantu ababili abane-MS efanayo.
Lokho kusho ukuthi njengoba izinhlangano ze-MS ziqhubeka nokulwa nomuthi futhi zinikeze izinsizakalo ezisiza abantu baphile kahle ngesifo sabo, kubalulekile ukuthi uhlale unamandla ekuhambeni kwakho kwe-MS.
> Imithombo:
> Birnbaum, MD George. (2013). I-Multiple Sclerosis: Umhlahlandlela Womtholampilo Wokuthola Ukuxilongwa Nezokwelapha, Edition 2. ENew York, eNew York. I-Oxford University Press.
> Ziemssen T. Symptom Management in Iziguli Nge-Multiple Sclerosis. J Neurol Sci . 2011 Dec; 311 Ukusekela 1: S48-52.