Ukujamelana neLupus Kudinga inkxaso
Enye yezinyathelo zokuqala ekujonganeni nokuxilongwa kwe-lupus iyakuqonda ukuba awukho yodwa - ukuba kukho abanye abantu ngaphandle apho bahamba into eninzi. Ukwabelana ngamabali nokunika iingcebiso ngamaqela enkxaso, bobabini kumntu kunye nakwi-inthanethi, yindlela enye ininzi kulabo abachaphazelekayo ne-lupus ekujonganeni nemingeni yemihla ngemihla ehambelana nesi sifo.
Ithemba lethu malunga neLupus liza kunika inkxaso kuyo nayiphi na indlela esinokuyenza ngayo. Yingakho sithemba ukuba ngokubonakalisa amabhinqa anesibindi namadoda aphethwe yi-lupus, siza kunika umntu ngaphandle osufumene ufumanisa ukuba, unomdla obunzima ngesifo sakhe, okanye mhlawumbi ufuna ukwazi ukuba kukho omnye umntu ngaphandle oko bahambayo, isiphakamiso abayidingayo.
Omnye umntu onjalo onokukunceda nguAlicia Springgate, ohlala eWashington kunye noLas Vegas ozalwayo ofunyanwe ne-lupus emva kokuphindaphindiweyo kwe-pleurisy (ukuvuvukala kwemida yeemiphunga), ukuphuphuma kwamaphaphu kunye nokuhluleka kwentliziyo.
Ndathetha noSpaggate ngamava akhe.
Mayelana neLupus (LUP): Ufunyanwe njani?
UAlicia Springgate (AS): Emva kokuba ndibekwe kwi-ICU, ingcali yampompo yam yaqonda ukuba iimpawu zam [zangoku], kwakunye neempawu endandizifumana ngaphambili, zazibangelwa yimpusicus erythematosus (SLE) .
Zonke iimvavanyo zabuya zichanekile nge-lupus. Emva kokuxilongwa, ndatshatyalaliswa ngokukhawuleza nge-steroids, eyathuthukisa imeko yam ngokukhawuleza.
I-LUP: Yintoni eyayihamba ngentloko yakho xa ufumene?
I-AS: Akukho mntu ungandixelela ukuba yiyiphi i-lupus okanye yintoni endiyilindeleyo, kwaye ngoko ndatshitshisa kakhulu kwaye ndazi ukuba kufanelekile.
Emva koko ndenza uphando lwam, kwaye iziphumo zandivotela: ndaqonda ukuba ndinempawu ezi-9 ezi-11 ezisetyenziselwa ukuhlolisisa eso sifo. Kamva ndafumanisa ukuba ndinesimo esibi kakhulu, esisongela ubomi besifo.
I-LUP: Ziziphi iintlobo ezikhethwa kuzo, ngokuzonyango, ngokuphathelele unyango ?
I-AS: Ekuqaleni, i- steroids , i- anti-inflammatories , kwaye, ekugqibeleni, izidakamizwa ze-chemotherapy, kuquka i- Imuran (azathioprine) kwaye ngoku i- CellCept (i-mycophenolate mofetil) .
I-LUP: Luphi uhlobo lwenyango olulandelayo?
AS: Yonke into enikwe. Ekugqibeleni ndineempembelelo ezininzi, kwafuneka ndikhulise amayeza endikulwa nawo. [Ndaqhubeka] izinto ezinjengeepilisi zentliziyo, imishanguzo yegazi, imichiza yeentlungu, imithi yokugxotha. Ngoku, uludwe lufikelela kumayeza angama-28 ngosuku.
I-LUP: Yintoni eyamangalisa kakhulu malunga ne-lupus?
I-AS: Ukuba sisifo esibuhlungu esichaphazela zonke iindawo zobomi bakho.
I-LUP: Ngaba ufumene nayiphi na inkxaso kwingingqi yakho okanye kwi-intanethi eye yanceda? Ukuba kunjalo, ukukunceda njani?
NJENGOBA: I-Lupus Foundation yaseMelika (LFA) ibe luncedo olukhulu njengoko lenze ukuba ndiyazi ngokuqhubekayo uphando, yiziphi izinto endikukhethayo kunyango, izinto abanye abazenzayo kunye nendlela enokubanceda ngayo abanye.
I-LUP: Ingaba intsapho yakho iyazi malunga nokuxilongwa kwakho? Ziziphi iindlela eziye zanceda?
I-AS: Intsapho yam iluncedo kakhulu, ukususela ngomhla wokufumana kwam. Baya kwi-intanethi, baqhuba uphando lwabo, baza bathenga am iyeza xa ndingenakukwazi ukuzifumana. Bandiqhubela eCalifornia ngoko ndiza kunyangwa kwizibhedlele ezifanelekileyo kwaye ndibe ngabancedisi bam iminyaka emithathu edlulileyo. Ziyindlela yam yokuphila.
(Isaziso soMhleli: Umama ka-Alicia uchaza oko kuthanda ukuba ilungu lentsapho lomntu onomphefumlo kwiphepha 2.)
I-LUP: Yiyiphi ingcebiso onokuyinika umntu ofumanisa nje ukuba bane-lupus?
I-AS: Zibophe yonke uphando onokuyibuthela kunye nezona zonyango ezikhoyo. Ukwenza uphando, ukuzifundisa, kwakungusindiso lwam olusindisa - de ndifumene ugqirha owayenyanisekile novelwano. Kwakungenako ukwesaba ukubuza imibuzo yezinye iingcali zezokwelapha xa kukho into ephathelene nokugula kwam kwaye yayingazi kakuhle.
Kwakhona, fumana inkxaso yeemvakalelo, nokuba ngaba ngumgqirha onikwe ilayisenisi, iqela lokuxhasa icawa, okanye iqela loxhaso lwendawo. Andicingi ukuba ndiza kuyenza xa bekungekho yenkxaso.
UAlicia wayenenhlanhla ukuba abe nenkxaso yentsapho yakhe, ekhokelwa ngumama wakhe, uLinda Springgate. Sacela uLinda ukuba wayephi na amava akhe xa efumene intombi yakhe ine-lupus.
I-LUP: Ufumene njani ukuba intombi yakho ine-lupus?
ULinda Springgate (LS): Unditshilo ngelixa esesibhedlele esaphathwa ngokusweleka kwentliziyo.
I-LUP: Yintoni owasabela ngayo?
I-LS: Ukutshitshisa okokuqala, ngoko konke kwenziwa ngqiqo xa siphanda esi sifo.
LUP: Yintoni eyamangalisa kakhulu ngo-Alicia's lupus?
I-LS: Yeka indlela ephazamisayo ngayo [yethu] intsapho yethu yonke kunye nendlela esondele ngayo.
I-LUP: Ucinga ukuba yiziphi iindlela eziye zamnceda kakhulu? I-LS: Simi kuye kwasekuqaleni, simthabatha kwiingcali ezivela kwilizwe, simxhasa ngemali, kwaye ekugqibeleni, sinyamekela yena kunye nendodana yakhe yeshumi elivisayo kwiminyaka emithathu edlulileyo.
LUP: Ziziphi iinkalo zenkxaso oza kugxila kwixesha elizayo?
I-LS: Ukubambelela ngecala lakhe kuzo zonke izibhedlele zesibhedlele kunye nokumnceda ukuba aphumelele kwiimvakalelo kunye neengxaki zesifo.