Ukufumana ugqirha ofanelekileyo kuwe noqondayo ngamanye amaxesha kunokuba nzima kancinci. Sonke sahlukile, sineemfuno kunye nezinto ozithandayo ezahlukeneyo. Ngoko ke ukuba unesifo esingaqhelekanga esifana ne-hATTR Amyloidosis , unokusifumana sinzima nangakumbi. Xa unyanga imeko efana nale, kubalulekile ukufumana ugqirha osiqonda kakuhle esi sifo kwaye oza kukunika inqanaba lonyango olufunekayo. Enyanisweni, ukuze ufumane unyango olungcono, kufuneka ufumane iingcali ezininzi kwiinkalo ezahlukeneyo.
Ngabaphi oogqirha abanyanga i-hATTR?
Ngamafutshane, i-hATTR amyloidosis sisifo esingaqhelekanga esinokuchaphazela amalungu amaninzi emzimbeni wakho ngaxeshanye. Oku kuthetha ukuba awuyi kukwazi ukufumana unyango kwingcali enye kuphela. Uya kufuna inkxaso yeqela lezifundo ezahlukeneyo.
Umzekelo, ukuba intliziyo yakho ichaphazelekile sesi sifo, kuya kufuneka ubone ugqirha wentliziyo. Kwelinye icala, ukuba unengxaki yemithambo-luvo, njengokungaziva okanye ubuthathaka emilenzeni yakho, kuya kufuneka ubone ugqirha wemithambo-luvo. Ngoko ke, iimpawu ozifumanayo, amalungu omzimba achaphazelekileyo, kunye nobungakanani bomonakalo obangelwe sisifo kuya kugqiba ukuba zeziphi iingcali omele uzibone.
Kwitheyibhile engezantsi, siza kubona ukuba zeziphi iingcali ezifuneka kakhulu kwisifo se-hATTR kunye neentlobo zeempawu abazinyangayo.
| Icandelo lezonyango elikhethekileyo | Iimpawu/iimeko eziqhelekileyo abazinyangayo |
|---|---|
| Ingcali yentliziyo | Ukusebenza kwentliziyo okubuthathaka (iCardiomyopathy), ukungalingani kwesigqi sentliziyo, ubunzima bokuphefumla. |
| Ingcali yezifo zengqondo | Ukuba ndindisholo, ukurhawuzelela, iintlungu, kunye nokulahlekelwa luvakalelo kwimilenze (i-Peripheral Neuropathy). |
| Ingcali yezifo zesisu | Intlungu yesisu, urhudo, ukuqhina, ukuncipha komzimba, isicaphucaphu. |
| Ingcali yezifo ze-nephrological | Xa izintso zichaphazeleka (umz. iiproteni kumchamo). |
| Ingcali yamehlo | Xa amehlo echaphazeleka (umz. uxinzelelo oluphezulu lwamehlo, umbono ofipheleyo). |
| Umcebisi wezeMvelo | Ekubeni esi sisifo esidluliselwa kwilifa, iintsapho kufuneka zicetyiswe malunga nomngcipheko kunye novavanyo lwemfuza. |
Iimpawu zakho zinokuxhomekeka kutshintsho oluthile kwi-gene ye-Transthyretin (TTR) ebangela esi sifo. Oku kuya kuqinisekisa ukuba loluphi uhlobo logqirha olufunekayo. Kusenokufuneka ubonane nezinye iingcali ukuba iimpawu ezintsha ziyavela ngokuhamba kwexesha njengoko isifo siqhubeka.
Ungayifumana njani ingcali ye-hATTR eSri Lanka?
Xa unyanga isifo esingaqhelekanga esifana nesi, kubaluleke kakhulu ukufumana unyango olukhethekileyo. ESri Lanka, eyona ndlela ilungileyo yokwenza oku kukuya kwisibhedlele esikhulu apho iingcali ezininzi zisebenza kwindawo enye.
Ngokwesiqhelo, kwizibhedlele ezinkulu zikarhulumente ezifana nezibhedlele zokufundisa kunye nesibhedlele sikazwelonke saseSri Lanka, iingcali kwiinkalo ezahlukeneyo ziyadibana ukuze zinyange izigulana. Ezinye izibhedlele ezinkulu zabucala nazo zinokuba nale ndawo.
Inyathelo lakho lokuqala kolu hambo kufuneka libe kukubona ugqirha wosapho lwakho (GP). Angakuthumela kwingcali efanelekileyo okanye esibhedlele esineqela leengcali, kuxhomekeke kwiimpawu zakho.
Inzuzo yokufumana unyango kwiziko elifana neli kukuba bonke abantu abakukhathaleleyoUkuba neerekhodi zakho zonyango kwindawo enye kuthetha ukuba oogqirha banokuxoxa ngemeko yakho ngokulula baze bafikelele kwisicwangciso sonyango esingcono. Ungafunda nangonyango olutsha okanye iimvavanyo zeklinikhi.
Ngaba ndiza kumdinga ugqirha wosapho lwam?
Ewe, ngokuqinisekileyo. Nokuba une-hATTR, ugqirha wakho oyintloko ubaluleke kakhulu. Nguye oyintloko yempilo yakho. Kubaluleke kakhulu ukuba nonxibelelwano oluhle phakathi kweqela lakho leengcali kunye nogqirha wakho wosapho . Ungalibali ukwazisa ugqirha wakho wosapho ngayo yonke into oyibonileyo, oyinyangileyo, oyivavanyileyo, njl. Kwakhona, nika ugqirha wakho wosapho iikopi zeengxelo zakho zeengcali.
Ndingaludibanisa njani unyango lwam noogqirha abaninzi?
Nangona oku kungabonakala ngathi ngumceli mngeni, kulula kakhulu ukuba uceba kwangaphambili.
- Gcina ifayile yakho: Gcina zonke iingxelo zakho zovavanyo, amayeza, kunye nemiyalelo kwifayile enye. Gcina incwadi yeklinikhi.
- Gcina yonke into inolwazi: Xelela ugqirha ngamnye ombonayo ngazo naziphi na iimpawu ezintsha ozivezayo, okanye ukuba uphawu oludala luya lusiba mandundu.
- Buza imibuzo: Ukuba kukho into ongayiqondiyo, ungoyiki ukuphinda ubuze ugqirha wakho. Kubaluleke kakhulu ukuba ube nokuqonda kakuhle isifo sakho kunye nonyango.
Ndingakhetha njani ugqirha ofanelekileyo kum?
Udinga ukuba nolwalamano oluhle nogqirha okunyangayo, kuba olu luhambo olude.
Lilungelo lakho ukukhetha ugqirha oza kumamela, akuphathe ngentlonelo, aze akuqonde oko ukuthethayo.
Ungakhetha ugqirha ongowesini sakho. Okanye, ungakhetha umntu ochaza izinto ngendlela onokuyiqonda. Xa ujongene nesifo esifana nesi, kubalulekile ukubona ugqirha onokukukhokela kwindlela esichaphazela ngayo amanye amalungu osapho kunye novavanyo abanokulufuna.
Ukuba awuziva ukhululekile ngogqirha wokuqala oza kubonana naye, ungakhathazeki ngaloo nto. Kukho abanye oogqirha abalungileyo abaya kukufanelekela kwaye baqonde iimfuno zakho. Yenza uphando kwaye ufumane ugqirha ofanelekileyo kuwe.
Umyalezo Wokuya Ekhaya
- I-haATTR amyloidosis sisifo esichaphazela amalungu amaninzi emzimbeni, ngoko ke uya kufuna inkxaso yeqela loogqirha abanolwazi kwiinkalo ezahlukeneyo.
- Inyathelo lokuqala kuhambo lwakho kufuneka libe kukubona ugqirha wosapho lwakho (GP). Uza kukuthumela kwiingcali ezifanelekileyo.
- Kubalulekile ukugcina unxibelelwano oluhle phakathi kwabo bonke oogqirha abakunyangayo. Gcina zonke iirekhodi zakho zonyango zilungile.
- Zinike ixesha lokufumana ugqirha okumamelayo, okuhlonelayo, nokukuchazela izinto ngokulula. Ukufuna unyango kugqirha oziva ukhululekile kuye nomthembayo kubaluleke kakhulu kwimpilo yakho yengqondo.
- Khumbula ukuba awuwedwa kolu hambo. Ngolwalathiso lweqela lezonyango elifanelekileyo, ungaphila ngempumelelo nale meko.
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