Uma kuziwa empilweni yakho nge- lupus , uyingcweti. Unokuhlangenwe nakho kokuphila kokuphatha i-lupus. Futhi kunezindlela eziningi zokusebenzisa izwi lakho nesipiliyoni ukukhuthaza izidingo zakho nezidingo zomphakathi we-lupus.
Umgomo wakho njengommeli we-lupus ukuthola lokho okudingayo kumuntu onamandla okukunika okudingayo. Lokhu kungase kusho ukuzikhulumela udokotela wakho noma ukuhamba ezweni lomshuwalense wezempilo noma ezinye izinzuzo.
Kungase kusho ukuthi usebenzisa izwi lakho ukuze unake izinhlangano zendawo ezidinga ukufunda okwengeziwe nge-lupus. Noma kungase kusho ukusebenzisana nezikhulu zikahulumeni emazingeni omphakathi, wesifunda, noma e-federal ukuze athole ukuxhaswa ngemali ehlobene nempilo noma izinqubomgomo ezihlobene nempilo.
Ukuzikhulumela ngokwakho nokukhuthaza eNkulumweni yomuntu siqu
Ungaba ngummeli ngezindlela eziningi. Eqinisweni, cishe usuvele ukhona. Ukuxhumana ngokuphumelelayo nodokotela wakho, isibonelo, yindlela eyodwa oyithandayo: Ubuza imibuzo. Uqinisile uma udinga ukuba ungahlali usulu uma unenkinga mayelana nemithi yakho noma ukwelashwa.
Gwema isicupho se-Good Patient Syndrome. I-Good Patient Syndrome yilapho umuntu ekholelwa ukuthi bayothola ukunakekelwa kwezempilo okungcono uma bevuma. Bakholelwa ukuthi ukuzikhulumela kuzokwenza udokotela wabo afane nabo.
Futhi uma udokotela wabo ebathanda kakhulu, udokotela wabo uzobanikeza ukunakekelwa kwezempilo okuphansi. Lokhu akulona iqiniso.
Uyothola amathuba okuthola usizo oluhle lwezempilo ngokusebenzisa amakhono amahle okuxhumana nabodokotela bakho, okubandakanya ukubuza imibuzo, ukusho noma ukukhathazeka, nokukhuluma okudingayo.
Ngezinye izikhathi ukuzimela kusho ukufuna usizo nokuthola umuntu ongakwazi ukukukhuthaza ngezinga elihlukile. Isibonelo, ungase uxhumane nenhlangano yakho yangasese ye-lupus uma udinga ukuthola usizo lokudokotela ukuze usize ukukhokha imithi yakho. Ungase ukhulume nesisebenzi sezenhlalakahle sakho uma udinga usizo ekuqondeni izikweletu zezokwelapha, ikakhulukazi uma udinga ukuba zikufundise ukuthi ungaphikisana kanjani necala noma uthole usizo lwezezimali esibhedlela. Ungase ufune usizo enhlanganweni yendawo esisiza ngomshwalense wezempilo noma ukubhaliswa kwesitembu sokudla.
Ukwandisa ukuqwashisa kwe-Lupus nokukhuthaza eNkulweni yomphakathi
Ukwethula ulwazi mayelana ne-lupus kubalulekile ngezizathu ezimbalwa. Okubaluleke nakakhulu, ochwepheshe bezokwelapha kanye neziguli ziyazi nge-lupus, ngokushesha umuntu angathola ukutholakala okunembile. Ukuqwashisa okwengeziwe mayelana ne-lupus, ucwaningo oluningi lwe-lupus kanye nezinsizakalo kuzoba khona. Ngokuqwashisa kwe-lupus, ukuqonda okwengeziwe kuyoba khona ngesifo futhi abantu abangenalutho nabangacacile abaphethe i-lupus bazozizwa.
Zibandakanye nhlangano yakho yasekhaya ye-Lupus. Izinhlangano ze-Lupus zenza umsebenzi omningi ukuphakamisa imikhondo yokuqwashisa i-lupus, imicimbi yendawo yasemakhaya kanye neyezimali, kanye nemikhankaso yokuqwashisa abezindaba.
Bavame ukucela usizo kumavolontiya. Xhumana ne-lupus inhlangano yakho yangakini ukuze ufunde imicimbi yabo yemfundo ye-lupus ukuze ukwazi ukugcina up-to-date kwi-lupus. Lokhu kuzokusiza ukuba ube ummeli onolwazi. Kodwa futhi xhumana nabo ukuze uthole ukuthi ungabasiza kanjani ngomsebenzi wabo. Bangase badinge usizo ngemikhonyovu yezempilo yokusebenza noma ukuhamba kwabo kwonyaka, isibonelo.
Yabelana ngolwazi nabanye mayelana ne-Lupus. Uma ubabuza, izinhlangano ze-lupus zizokunikeza ulwazi ngezinto zemfundo mayelana ne-lupus ongayinika abantu. Ungashiya amasaka kulawa ezindaweni ezinjengelabhulali yasendaweni, i-salon yezinwele, ihhovisi legatsha, indawo yokukhulekela, ihhovisi likahulumeni, noma i-cafe.
Abantu bazobabona, babathathe, bafunde, futhi bafunde nge-lupus. Lokhu kuzosiza abantu baqaphele ukuthi kukhona inhlangano ye-lupus yendawo enikeza ukusekelwa nezinsiza.
Ungakhohlwa ukufundisa odokotela bakho. Akuzona zonke odokotela abazi okuningi mayelana ne-lupus, ikakhulukazi uma bengasebenzi kwi-rheumatology. Yingakho imizamo efana ne-Lupus Initiative ikhona. I-website yabo ichaza ukuthi, "Izinhloso zalezi zinsiza zemfundo [ezinikezela ochwepheshe bezokwelapha, iziguli, nabalandeli babo] zizokwandisa inani labachwepheshe bezokwelapha ngolwazi nobuchwepheshe ekuxilongweni nasekwelapheni i-lupus, ukunciphisa ukuphuthelwa nokungaziphathi kahle , ukuthuthukisa ukukhulumisana nokunamathela okukhulu kwesiguli emithini yokwelashwa, nokwandisa inani leziguli ezithintekayo ekuphathweni kwezifo. "
Uma ungathanda ukuthola ulwazi lokuthi ungaxhuma kanjani ochwepheshe bezezempilo eqenjini lakho lokunakekela impilo nalezi zinsiza zamahhala, xhumana ne-Lupus Initiative.
Hlela isethulo se-Lupus emphakathini wakho. Abantu abane-lupus nabathandekayo babo ngezinye izikhathi bahlela imicimbi yezempi ye-lupus eyabo. Lokhu kulula ukukwenza uma kunezilaleli ezakhelwe ngaphakathi njengemhlangano wendawo yomsebenzi, ngesikhathi sekilasi, noma ngesikhathi noma ngemuva kwenkonzo endaweni yokukhulekela. Kuvame ukuwusizo uma ulwazi mayelana ne-lupus luhambisana nomlando womuntu we-lupus. Izimpawu ze-Lupus zingaba nzima ukuyiqonda, yingakho ukuzwa othile ekhuluma ngalokho okuhlangenwe nakho kwakhe kungenza kube lula ukuqonda lesi sifo.
Spread awareness on internet. I-intanethi, ikakhulukazi imithombo yezokuxhumana, iyithuluzi elinamandla lokukhulisa ukuqwashisa kwe-lupus. Abantu babelana ngokuhlangenwe nakho kwabo siqu kubhulogi zabo noma njengezibuyekezo zesimo kumasayithi wezokuxhumana wezenhlalo njenge-Facebook. Izithombe zokwabelana ngezithombe ezinjenge-Instagram zinhle ukwabelana ngezithombe zalokho ukuphila nge-lupus kubonakala sengathi. Amawebusayithi ephrojekthi we- Lupus wokudlala izithombe afana ne-Lupus ngokusebenzisa i-Lens futhi inikeza izibonelo ezinamandla zezithombe zokuphila nge-lupus ezithombeni. I-Twitter ne-Facebook izingxoxo zihlelwe ukuxhuma abantu abane-lupus komunye nomunye noma ochwepheshe bezempilo. Ama-hashtag ahlobene ne-Lupus-afana no-#lupus, #lupusawareness, # # -sionie-usizo abantu bathola okuthunyelwe mayelana ne-lupus nokugula okungapheli.
Ingxenye enhle yokwabelana nge-intanethi ukuthi ungabelana ngokuhlangenwe nakho kwakho, kodwa akudingeki usebenzise igama lakho langempela. Ukungaziwa kungasiza abantu ukuthi bahlanganyele ngokwethembeka ngaphandle kokukhathazeka ukuthi lokho abakushoyo kungalandelwa kubo. Lokhu kubaluleke kakhulu uma bengatshele abantu empilweni yabo ukuthi bane-lupus, njengabasebenza nabo nabaqashi.
Ukubhala nokwabelana nge-lupus kungaba nomuzwa wokuthi uphethwe, futhi kuyasiza kubantu abafunda okuthunyelwe kwakho. Abafundi bangase bazizwe bengasodwa uma bebona okuthile okushoyo, noma bangase baqonde kangcono okuhlangenwe nakho komunye umuntu ngoba akuwona wonke umuntu ohlangenwe nakho okufanayo. Lolu lwazi lubuye lusize abantu abangenakho i-lupus ukuze baqonde kangcono lesi sifo.
Bamba iqhaza ekuhambeni kwe-Lupus. I-Lupus ihamba ngokujwayelekile iphakamisa ucwaningo lwe-lupus, okubalulekile. Kodwa futhi basiza ukukhulisa mayelana ne-lupus. Ukuhamba kungaletha iqembu labantu abangahle bahlanganyele emcimbini we-lupus. Kungenzeka ukuthi babengazi okuningi mayelana ne-lupus noma. Ukuhamba kuyindlela enhle yokugcina othandekayo bakho abathintekayo emphakathini we-lupus. Uma kwenzeka kumcimbi wokuhamba, ungahamba okuningi noma okuncani njengoba uthanda. Ukuhamba nakho kuyizindlela ezinhle zokubandakanyeka noma ukuzivolontiya ne-lupus inhlangano yangakini. Uma uphakanyisiwe, bacele ngezindlela ongabasiza ngazo ngezinyawo zabo.
Ukuba Ummeli WeNqubomgomo Yezempilo Nezimali
Hlala uxhumeke nezinhlangano ze-Lupus. Izinhlangano ze-Lupus zivame ukukwazi amathuba omphakathi wendawo, wesifunda, kanye nesifundazwe. Thintana nezinhlangano zakho ze-lupus zikazwelonke ezifana neLupus Research Alliance noma i-Lupus Foundation of America ukuthola ukuthi yimaphi amathuba okukhuthaza abanikezayo. Uma ubhalisela iphephandaba labo, ungathola imikhankaso ye-imeyili icela ukuthi uthathe isenzo. Isenzo singenza okuthile okufana nokuxhumana nabameleli bakho bakahulumeni. Futhi, thinta inhlangano yakho ye-lupus yendawo. Bangase bahileleke ekukhulumeni, futhi. Imikhankaso yokugqugquzela i-Lupus ingahlobana nenqubomgomo yezempilo noma imali yokunakekelwa kwezempilo.
I-World Health Organization ichaza inqubomgomo yokunakekelwa kwezempilo ngokuthi "izinqumo, izinhlelo, nezenzo ezenziwa ukufeza imigomo ethile yokunakekela impilo emphakathini." Isibonelo esikhulu senqubomgomo yokunakekelwa kwempilo ngumthetho wokunakekelwa okungenakusiza (ACA; owaziwa nangokuthi "Obamacare), owasayinwa ngumthetho ngo-2010. Futhi ngaphakathi kwe-ACA, kunesici esiyinhloko esenza kube semthethweni ezinkampanini zomshuwalense wezempilo ukwenqaba qinisekisa abantu abanezimo ezandulele.
Izimo ezandulele zikhona izimo zezempilo ezazikhona ngaphambi kosuku olwenziwe ngalo umshuwalense wezempilo. Kwamanye amazwe, kwakungaba nzima kubantu abane-lupus ukuthola umshuwalense wezempilo ngoba i-lupus yisimo esandulele. Noma kunjalo, ukutholakala komshuwalense wezempilo nokukwazi ukuthola usizo lwezokwelapha kubalulekile kubantu abane-lupus. Njengoba ungabona, inqubomgomo yokunakekelwa kwezempilo ingaba nomthelela omubi noma omuhle empilweni yabantu, yingakho lezi zinqubomgomo zibalulekile.
Isibonelo sokugqugquzela ngemali yezokunakekelwa kwezempilo sizohamba nomhlangano wakho wendawo lupus kuWashington DC ukuhlangabezana nabamele bakho. Kule mihlangano, ungabacela ukuba basekele ukwanda kwezimali zokucwaninga ngempilo. Imali enjalo ingaba yocwaningo olwesekelwa yizikhungo zezempilo zikazwelonke ukuze ukucwaninga ngezokwelapha kanye nokuphathelene nezifo ezinjenge-lupus kungaqhubeka.
Ukukhuthaza Ukunakekelwa Okunakekelwa Iziguli
Push for umuthi wokuhlanganyela. Ngokusho kweNhlangano Yezokwelapha Ezibandakanyekayo, "Imithi Yokubamba iqhaza iyisibonelo sokunakekelwa kwezempilo okubambisana okuhlose ukufeza ukubandakanyeka okusebenzayo iziguli, ochwepheshe, abazinakekeli, nabanye ngokuqhubekayo kokunakekela kuzo zonke izindaba ezihlobene nempilo yomuntu. indlela yokuziphatha yokunakekela ephethe isithembiso sokuthuthukisa imiphumela, ukunciphisa amaphutha ezempilo, ukwandisa ukwaneliseka kwesiguli nokuthuthukisa izindleko zokunakekelwa. "
Esinye isici esibalulekile semithi yokwenza iqhaza ukuthi iziguli nodokotela kufanele babonakale njengabalingani, ikakhulu uma kuziwa ekwenzeni izinqumo zokunakekelwa kwezempilo. Ukuthola amarekhodi ezempilo e-electronic (EHR) nokuqonda nokuvikela amalungelo akho mayelana nolwazi lwezempilo lwezempilo oluhlobene noMthetho Wokubheka Umshwalense Wezempilo (HIPAA) yizindlela ezimbili zokufaka imithi yokwenza iqhaza.
Bamba iqhaza ekucwaningeni okugxilwe ngesiguli. Ngokwesiko, ucwaningo oluthile lwezokwelapha nolwezempilo luqhutshwa odokotela nososayensi. Ngaphambilini, indlela kuphela ukuthi iziguli zingabamba iqhaza ekucwaningweni ngokuhlanganyela emcimbini wokwelashwa. Manje, ngezinhlangano ezinjengeziguli eziPhezulu eziPhuthumayo (Research Patient Research Institute) (PCORI), iziguli zingaba yingxenye yocwaningo: Iziguli zingaphakamisa imibuzo yocwaningo futhi zibandakanyeke kuzo zonke izinyathelo zenqubo yocwaningo. Iziguli zingasebenza futhi zibe yingxenye yamaphakheji weluleko ze-PCORI.
Imicabango Yokugcina
Ukuba ngummeli kuyindlela eyisisekelo futhi edingekayo yokugqugquzela. Wonke umuntu onenkinga ye-lupus noma yimuphi impilo kufanele asebenzise lolu hlobo lokumemezela. Uma wenza okunye okukwenza lokhu: Hlanganisa amakhono amakhono okuxhumana nodokotela wakho, okuyindlela yokusiza ukuqinisekisa ukuthi uthola ukunakekelwa okungcono kunokwenzeka.
Kunezinketho eziningi zokuzibandakanya ekukhuthazeni kwamanye amazinga. Uma unesithakazelo ekumemezelweni, khetha ukuthi yini ehamba phambili kuwe kanye nendlela yakho yokuphila. Yize kungase kube ukulingwa, zama ukungathathi okuningi ngesikhathi esisodwa. Uma kungenjalo, uzobe ukhululekile. Ukuphatha amandla nokukhathala kusebenza nomsebenzi wakho we-lupus wokumemezela, futhi.
Zonke izindaba zokugqugquzela-kusukela ukwabelana okuthunyelwe kuma-social media mayelana ne-lupus ukuya eWashington DC ukuze ukhulume nabameleli bakho bakahulumeni. Wonke amazinga omnikelo abalulekile. Ayikho into encane kakhulu, ngakho yenza lokho okuhambelana nokuphila kwakho, amakhono akho, namandla akho. Izindaba zezwi lakho!