Xa kuziwa ebomini bakho nge- lupus , uyingcali. Unamava aphile ngokulawula i-lupus. Kwaye kukho iindlela ezininzi zokusebenzisa igama lakho namava ukukhuthaza iimfuno zakho kunye neemfuno zomphakathi we-lupus.
Injongo yakho njengommeli we-lupus ukufumana oko ufunayo kumntu onamandla okukunika oko kukufunayo. Oku kunokuthetha ukuzithethelela ugqirha okanye ukuhamba nge-inshurensi yezempilo okanye ezinye iintlawulo.
Kungathetha ukusebenzisa igama lakho ukuze ufumane ingqalelo kwimibutho yasekhaya ekufuneka ifunde kabanzi malunga ne-lupus. Okanye kunokuthetha ukusebenzisana namagosa karhulumente kummandla wendawo, urhulumente, okanye ama-federal ukuba athole inkxaso ngenkxaso-mali enxulumene nempilo okanye iinkqubo ezinxulumene nempilo.
Ukuzithethelela wena kunye nokukhuthaza kwiNqanaba lomntu
Unokuba ngummeli ngeendlela ezininzi. Enyanisweni, mhlawumbi sele ukhona. Ukunxibelelana ngokufanelekileyo ngogqirha wakho, umzekelo, yindlela enye oziphakamisayo: Ubuza imibuzo. Unyanzelisa xa kufuneka ukuba ungadingi xa unenkxalabo malunga namayeza akho okanye unyango.
Gwema umgibe weSilly Patient Syndrome. I-Good Patient Syndrome yilapho umntu ekholelwa ukuba baya kufumana unyango lwempilo xa bevuma. Bakholelwa ukuba ukuzithetha ngokwabo kuza kwenza ugqirha wabo njengabo.
Kwaye ukuba ugqirha uyabathanda, ugqirha uya kubabonelela ngononophelo lwempilo esemgangathweni. Oku akunjalo.
Uya kuphucula amathuba akho okufumana unyango olungcono kakhulu ngokusebenzisa izakhono ezinxibelelwano ezintle kunye noogqirha bakho, okubandakanya ukubuza imibuzo, ukuchazela nayiphi na inkxalabo, kunye nokuthetha okufunekayo.
Ngamanye amaxesha ukuzithethelela kuthetha ukufuna uncedo kunye nokufumana umntu onokukwazi ukukukhuthaza kwizinga elithile. Ngokomzekelo, unokuqhagamshelana nombutho we-lupus wakho wendawo ukuba ufuna ukufumana uncedo lweemfuno zonyango ukunceda ukuhlawula amayeza akho. Unokuthi uthethe nabasebenzi bezentlalo xa uswele uncedo ekuqondeni iibhilikhi zonyango, ingakumbi ukuba ufuna ukuba zifundise indlela yokuphikisana ngokufanelekileyo nentlawulo okanye ukufumana uncedo lwezemali esibhedlele. Unokufuna uncedo kwintlangano yendawo ekunceda ngomshuwalense wezempilo okanye ukubhaliswa kwesitampu sokutya.
Ukwandisa uLupus Ukwazisa nokukhuthaza kwiNqanaba loLuntu
Ukuphakamisa ulwazi malunga ne-lupus kubalulekile ngezizathu ezimbalwa. Okubaluleke kakhulu, ootitshala bezonyango kunye nezigulane ziyazi malunga ne-lupus, ngokukhawuleza umntu unokufumana ukuxilongwa ngokuchanekileyo. Ukwazisa okubanzi malunga ne-lupus, uphando lwephus kunye neenkonzo ziya kuba. Ngomsoco we-lupus, ukuqonda ngakumbi kuya kubakho malunga nesifo kwaye abantu abangaphantsi kunye abangaqondi kakuhle abane-lupus baya kuziva.
Zibandakanye nentsapho yaseLupus yasekuhlaleni. Imibutho yaseLupus yenza umsebenzi omningi ukuphakamisa i-lupus-like walks, imfundo yendawo kunye neemeko zokuxhaswa kwezimali, kunye nemikhankaso yokuqwashisa amajelo asekuhlaleni.
Bahlala befuna uncedo kumavavolontiya. Qhagamshelana nombutho wakho we-lupus wendawo ukuba uye kwii-epus zeemviwo ze-lupus ukuze uhlale unomdla kwi-lupus. Oku kuya kukunceda ube ngummeli onolwazi. Kodwa qha ga mshelana nabo ukuze ufumane indlela onokubanceda ngayo ngomsebenzi wabo. Basenokufuna uncedo kunye neendleko zempilo zemisebenzi okanye ukuhamba kwabo ngonyaka, umzekelo.
Yabelana ngolwazi nabanye ngeLupus. Ukuba uyababuza, imibutho ye-lupus iya kuhlala ikunikezela ngezinto ezifundisayo malunga ne-lupus ongayinika abantu. Unokushiya iisitye ezi ndawo kwiindawo zepalayibrari yasekuhlaleni, i-hair salon, iofisi yegulane, indawo yokunqula, i-ofisi yeburhulumente okanye i-cafe.
Abantu baya kubabona, bathathe, bafunde, kwaye bafunde nge-lupus. Oku kuya kunceda abantu baqaphele ukuba kukho inhlangano ye-lupus yendawo ebonelela ngenkxaso kunye nezibonelelo.
Musa ukulibala ukufundisa oogqirha bakho. Akunabo bonke oogqirha abazi kakhulu nge-lupus, ingakumbi xa bengasebenzi kwi-rheumatology. Yingakho iinzame ezifana neLupus Initiative zikhona. I-website yabo ichaza, "Iinjongo zezibonelelo zemfundo [ukuba zibonelela ootitshala bezonyango, izigulane kunye nabalandeli babo] kukunyusa inani labaqeqeshi bezobugcisa ngolwazi kunye nobuchule ekuxilongweni nasekunyangeni kwe-lupus, ukunciphisa ukungaphumeleli nokungaqondi kakuhle , ukuphucula unxibelelwano kumanyathelo okubambelela kwiigulane zonyango, nokwandisa inani lezigulane ezithatha inxaxheba ekulawuleni izifo. "
Ukuba ungathanda ukufumana ulwazi malunga nendlela onokudibanisa abaqeqeshi bezempilo kwiqela lakho lononophelo lwezempilo kunye nezixhobo zentlalo, qhagamshelana neLupus Initiative.
Hlela umboniso weLupus kwindawo yakho. Abantu abane-lupus kunye nabathandekayo babo bahlaziye ngeziganeko zezemfundo ze-lupus. Oku kulula ukuyenza xa kukho izivakalisi ezakhelwe ngaphakathi kwintlanganiso yomsebenzi, ngexesha leklasi, okanye ngexesha okanye emva kwesevisi kwindawo yokunqula. Ngokuqhelekileyo luncedo xa ulwazi malunga ne-lupus ludibaniswa nebali lomntu we-lupus. Izimpawu zeLupus zinzima ukuyiqonda, yingakho ukuva umntu uthetha malunga namava abo angenza ukuba lula ukuqonda.
Ukusazisa ulwazi kwi-intanethi. I-Intanethi, ngokukodwa i-media media, iyisisombululo esinamandla sokukhulisa i-lupus awareness. Abantu babelana ngamava abo kwiiblogi zabo okanye njengendlela yokuhlaziywa kwesimo kumaziko ezentlalo zentlalo njenge-Facebook. Ukukwabelana ngezithombe ezinjenge-Instagram zikulungele ukwabelana ngezithombe zoluphi uhlobo lobomi obufana ne-lupus. Iifayili zeprojekthi ze-Lupus zephoto njengeLupus ngokusebenzisa iLens nazo zinika imizekelo enamandla yokufotoba yobomi kunye ne-lupus kwimifanekiso. Iingxoxo ze-Twitter kunye ne-Facebook ziququzelelwe ukudibanisa abantu abane-lupus komnye nomnye okanye kubaqeqeshi bezempilo. I-hashtag ezinxulumene ne-Lupus-njenge-#lupus, #lupusawareness, # spoonie-banceda abantu bathole izithuba malunga ne-lupus kunye nesifo esingapheliyo.
Inxalenye enhle yokwabelana nge-intanethi kukuba unokwabelana ngamava akho, kodwa akumele usebenzise igama lakho langempela. Ukungabonakali kunokunceda abantu bahlanganyele ngokunyanisekileyo ngaphandle kokuxhalaba ukuba oko bathethayo kunokulandelwa kubo. Oku kubaluleke ngakumbi ukuba abaxeleli abantu ebomini babo ukuba bane-lupus, njengabo basebenza nabo nabaqeshi.
Ukubhala kunye nokwabelana malunga ne-lupus kunokuziva utyando, kwaye kunceda abantu abafunda izikhalazo zakho. Abafundi banokuziva bekuncinci xa bechonga into oyithethayo, okanye bafumane ukuqonda okungcono kolunye umntu ngenxa yokuba amava onke awafani. Olu lwazi lunceda abantu abangenayo i-lupus ukuba baqonde kangcono eso sifo.
Nxaxheba kwiLupus walk. I-Lupus ihamba ngokuqhelekileyo iphakamisa uphando lwe-lupus, ebalulekileyo. Kodwa bancedisa ukuphakamisa ulwazi malunga ne-lupus. Ukuhamba kungakuzisa iqela labantu kunye abangaqhelekanga ukuba bathathe inxaxheba kwisiganeko se-lupus. Basenokuba besazi kakhulu malunga ne-lupus. Ukuhamba kuyindlela enhle yokugcina abathandekayo bakho babandakanyeka kwi-community lupus. Xa kwenzeka kwisiganeko sokuhamba, unokuhamba kangangoko okanye kuncinane njengoko uthanda. Ukuhamba ngeendlela ezintle zokubandakanyeka okanye ukuzivolontiya kunye nenhlangano yakho yasekhaya ye-lupus. Ukuba unyukile, bacele ngeendlela ongakunceda ngazo ngeendlela zokuhamba.
Ukuba nguMmeli woMgaqo-nkqubo wezeMpilo kunye neMali-mali
Hlala uqhagamshelana nemibutho yaseLupus. Imibutho yaseLupus ijwayele ukuqonda ngamathuba ommandla wasekuhlaleni, kumashishini nakwamanye amazwe. Xhumana nemibutho yakho yelizwe i-lupus njengoLupus Research Alliance okanye i-Lupus Foundation yaseMerika ukufumana ukuba yeyiphi amathuba okukhuthaza. Ukuba ubhalisela i-newsletter yabo, unokufumana iimikhankaso ze-imeyli ekucela ukuba uthathe isenzo. Isenzo singenza into efana nokuqhagamshelana nabameli bakho bakarhulumente. Kwakhona qha ga mshelana ne-lupus. Basenokubandakanyeka ekukhuthazeni, ngokunjalo. Imikhankaso yokuvakalisa uLupus inxulumene nomgaqo-nkqubo wezempilo okanye inkxaso yezempilo.
I-World Health Organisation ichaza umgaqo-nkqubo wokunakekelwa kwezempilo ngokuthi "izigqibo, izicwangciso kunye nezenzo ezenziwa ukufikelela kwiinjongo ezithile zononophelo lwempilo kuluntu." Umzekelo omkhulu wemigaqo yokunakekelwa kwempilo nguMthetho ojongene noNonophelo olungabonakaliyo (ACA; owaziwa ngokuba yi-"Obamacare"), owasayinwa ngumthetho ngowama-2010. Ngaphakathi kwe-ACA, kukho into ebalulekileyo eyenza ukuba kubekho mthethweni kwiinkampani ze-inshorensi zempilo ukungafuni uqinisekisa abantu abaneemeko zangaphambili.
Iimeko ezikhoyo ngaphambili ziimeko zezempilo ezikhoyo phambi komhla ozifakile kwi-inshurensi yezempilo. Kwamanye amazwe, kwakunzima ukuba abantu abane-lupus bafumane i-inshurensi yezempilo kuba i-lupus yimeko esele ikhona. Sekunjalo, ukuba ne-inshorensi yezempilo kunye nokukwazi ukufumana iinkonzo zonyango kubaluleke kakhulu kubantu abane-lupus. Njengoko ubona, umgaqo-nkqubo wezempilo unokuba nefuthe elibi okanye elihle kwimpilo yabantu, yingakho le migaqo ibalulekile.
Umzekelo wokunyusa inkxaso-mali wezempilo uza kuhamba kunye ne-lupus yakho yendawo yase-Washington DC ukudibana nabameli bakho. Kule ntla nganiso, uya kubacela ukuba baxhase ukwanda kwenkxaso-mali yophando lwempilo. Inkxaso-mali enjalo ingaba yocwaningo oluxhaswe yiZizwe zoLuntu zezeMpilo ukwenzela ukuba uphando olunxulumene nempilo kunye nezifo ezinjenge-lupus ziqhubeke.
Ukukhuthaza ukunyamekelwa kwabanyamekeli
Push for medicine inxaxheba. Ngokutsho koMbutho weNtsholongwane yeMicandelo, "Inyango yokuthatha inxaxheba ngumzekelo wokunakekelwa kwempilo ebambiseneyo efuna ukufezekisa ukubandakanyeka ngokunyanisekileyo kwezigulane, abaqeqeshi, abanonophelo kunye nabanye ngokuqhubekayo kokunyamekela kuyo yonke imiba enxulumene nempilo yomntu. indlela yokuziphatha yokunyamekela ephethe isithembiso sokuphucula iziphumo, ukunciphisa amaphutha ezonyango, ukwandisa ukwaneliseka kwesigulane nokuphucula iindleko zonyango. "
Enye into ebalulekileyo yonyango lokuthatha inxaxheba kukuba izigulane kunye noogqirha kufuneka babonakale njengabalingani, ngokukodwa xa kuziwa kukwenza izigqibo zonyango. Ukuba nokufikelela kwiirekhodi zezempilo ze-elektroniki (EHR) nokuqonda nokukhusela amalungelo akho malunga nolwazi lwempilo yobumfihlo ubandakanyeka noMthetho we-Inshurensi yokuPhathwa kweNtlawulo kunye noKhuseleko (i-HIPAA) ziindlela ezimbini zokunyusa iyeza zokuthatha inxaxheba.
Ukuthabatha inxaxheba kwiphando ejoliswe ngumonde. Ngokwesiko, uphando olwenziwe ngonyango kunye nempilo luqhutywa oogqirha kunye nososayensi. Ngaphambili, indlela kuphela yokuba izigulane zinokuthatha inxaxheba kulo uphando ngukuthatha inxaxheba kwilingo leklinikhi. Ngoku, kunye nemibutho efana neziPhulo eziPhuhliweyo zeziPhando zoPhando (i-PCORI), izigulane zinokuba yinxalenye yecandelo lophando: Izigulana zinokuphakamisa imibuzo yophando kwaye zibandakanyeke kuzo zonke iinkalo zenkqubo yophando. Izigulane ziyakwenza isicelo ukuba zibe yinxalenye yeepaneli zengcebiso ze-PCORI.
Iingcamango Zokugqibela
Ukuba ngummeli kuyona ndlela ebalulekileyo kunye neyimfuneko yokukhuthaza. Wonke umntu onesifo se-lupus okanye nayiphina imo yezempilo kufuneka asebenzise olu hlobo lokukhuthaza. Ukuba awukwenzi nto enye into: Yenza ubuchule bokunxibelelana noogqirha wakho, yindlela yokuncedisa ukuba ufumana uncedo olungcono.
Kukho ezininzi iindlela zokukhetha ukubandakanyeka kwamanye amanqanaba. Ukuba unomdla wokubhengezwa, khetha oko kukusebenza kakuhle nakwindlela ophila kuyo. Nangona ingaba ilingo, zama ukungazithathi ixesha elide. Ngaphandle koko, uya kuphazamiseka. Ukulawula amandla kunye nokukhathala kusebenza nomsebenzi wakho we-lupus wokukhuthaza.
Yonke into yokukhuthaza-ukususela kwi-post media media malunga ne-lupus ukuya eWashington DC ukuthetha nabameli bakho. Wonke amanqanaba omnikelo kubalulekile. Akukho nto encinci, ngoko yenza into ehambelana nokuphila kwakho, ubuchule kunye nomgangatho wamandla. Izwi lakho liyimicimbi!