Ngaba wena okanye umntu osondeleyo kuwe unesifo esingaqhelekanga esibizwa ngokuba yi-haATTR amyloidosis ? Emva koko, ukuya kugqirha mhlawumbi yinxalenye eqhelekileyo yobomi bakho. Kodwa ngalo lonke ixesha siya kugqirha, kubaluleke kakhulu ukusebenzisa kakuhle olo tyelelo. Eyona ndlela ilungileyo yokwenza oko kukulungiselela kancinci ngaphambi kokuba uye kugqirha. Xa uya kugqirha ngale ndlela, uya kuziva ukhululekile kwaye kuya kunceda ugqirha ukuba agqibe ngonyango olufanelekileyo kuwe. Makhe sibone indlela yokulungiselela oku kanye?
Okokuqala, masiqonde, yintoni i-hATTR Amyloidosis?
Ngamafutshane, i-hATTR sisifo esingaqhelekanga esizuzwa njengelifa, oko kuthetha ukuba sidluliselwa kwiijini kwiintsapho. Ngokuchanekileyo, yenye yeentlobo zezifo ezibizwa ngokuba yiTransthyretin Amyloidosis (ATTR). Esi sifo sinokuba sibi ngakumbi ngokuhamba kwexesha, ngoko ke kubaluleke kakhulu ukufumanisa isifo kwaye siqale unyango ngokukhawuleza .
Esi sifo sinokuchaphazela amalungu amaninzi emzimbeni wethu, ngoko ke kunokufuneka ubone iingcali ezahlukeneyo endaweni yesinye. Umzekelo:
- Ingcali yentliziyo
- Ingcali yeHematologist
- Ingcali yezifo zengqondo
Ayingabo bonke aba gqirha abasebenza kwinkqubo enye yesibhedlele. Ngoko ke musa ukucinga ukuba ulwazi lwakho olunikwe omnye ugqirha lufumaneka komnye. Ngamanye amaxesha, ngenxa yokuba iinkqubo zekhompyutha zezibhedlele aziqhagamshelwanga, iirekhodi zakho zonyango azabelwana ngazo. Yiyo loo nto kubalulekile ukuba nolwazi lwakho luze nawe kuyo yonke idinga.
Izinto ekufuneka uziphathe xa usiya kugqirha
Nokuba ugqirha wakho unerekhodi zakho zakudala zonyango, kungcono ukuba nolwazi lwamva nje luze nawe kuyo yonke idinga. Kuya kuba lula kuwe ukuba ezi zinto zicwangciswe kwaye zilungiswe kwifayile enye.
| Izinto ekufuneka uzilungiselele | Iinkcukacha eziza kubandakanywa |
|---|---|
| Uluhlu lweempawu | Bhala phantsi zonke iimpawu ze-haTTR ozifumanayo. Umzekelo, ukuhlanza, amehlo omileyo, amabala amnyama ahamba phambi kwamehlo akho, ukwehla kobunzima, ukuziva uzele nasemva kokutya ukutya okuncinci, ukudumba emilenzeni yakho, i-carpal tunnel syndrome. Kwakhona, xelela ugqirha wakho ngazo naziphi na iimpawu ezingaqhelekanga ezifana neentloko ezibuhlungu, isifo sohlangothi, ukulahlekelwa yinkumbulo, okanye ukuxhuzula. Iimpawu zinokutshintsha ngokuhamba kwexesha, ngoko xelela ugqirha wakho ngazo naziphi na utshintsho. Kubalulekile ukuxelela ugqirha wakho ukuba unezinye iimpawu ocinga ukuba azinxulumene ne-haTTR. |
| Amayeza, iivithamini kunye nezongezo | Bhala phantsi yonke imithi, iivithamini, kunye nesongezo osithathayo. Faka idosi, amaxesha osithatha ngawo, kunye nekhemesti esinika yona. Ukuba kukho amayeza athile e-hATTR (umz., eplontersen (Wainua) , inotersen (Tegsedi) , patisiran (Onpattro) , tafamidis (Vyndamax) ), qiniseka ukuba uwabhala phantsi. Kwanamayeza athengiswa ngaphandle kwemvume kagqirha afana nePanadol kunye neVithamin C anokubandakanywa kolu luhlu. |
| Imbali yakho neyentsapho yakho yezonyango | Xelela ugqirha wakho ngazo naziphi na ezinye iimeko zempilo onazo (umz. isifo seswekile, uxinzelelo lwegazi oluphezulu), kunye naluphi na utyando oye walwenza. Okubaluleke kakhulu, xelela amalungu osapho lwakho asondeleyo (abazali, abantakwenu) ngazo naziphi na iimeko zempilo onazo. Ukuba kukho umntu kusapho lwakho one-hATTR, mxelele ukuba zeziphi iimpawu eziphambili. |
| Iziphumo zovavanyo | Zisa zonke iziphumo zovavanyo ezinxulumene ne-hATTR. Ezi ziquka uvavanyo lwegazi, uvavanyo lwemithambo-luvo, uvavanyo lwentliziyo (ECG, Echo), iingxelo ze-MRI scan, kunye neengxelo ze-biopsy. Ingakumbi, ukuba unesampulu zezicubu ezithathwe kwi-biopsy yakho ye-abdominal fat pad okanye kwamanye amalungu omzimba, qiniseka ukuba uzizisa. |
| Iziphumo zoVavanyo lweMfuzo | Le yeyona ngxelo ibalulekileyo. Qiniseka ukuba uzisa ingxelo yovavanyo lwemfuza yokuqala eqinisekisile ukuba unenguqu kwi-gene ye-Transthyretin (TTR). Ukuba kukho nabani na kusapho lwakho (abazali, abantakwenu, abantwana) oye wavavanywa kwi-hATTR, kufanelekile ukuba nezo ngxelo nawe. |
| Uluhlu lwemibuzo omawuyibuze | Usenokulibala into ofuna ukuyibuza ugqirha. Ngoko ke, ngaphambi kokuba uhambe, bhala phantsi nayiphi na imibuzo onayo ephepheni. Kwakhona, yiza nencwadi yokubhala kunye nepeni ukuze ubhale phantsi oko ugqirha akuthethayo. Ukuba ukufumanisa kunzima ukwenza ezi zinto wedwa, ungoyiki ukuza nelungu losapho okanye umhlobo othembekileyo ukuze akuncede. |
Kutheni kubaluleke kangaka ukulungiselela ngale ndlela?
Khawucinge nje, zonke ezi nkcukacha zineenkcukacha ozinikayo zifana nomfanekiso kugqirha. Zimnceda ukuba aqonde ngokupheleleyo imeko yakho yempilo. Kulapho kuphela apho anokucebisa khona unyango olufanelekileyo noluchanekileyo kuwe.
Njengoko bekutshiwo ngaphambili, ulwazi alusoloko lusasazwa phakathi kwezibhedlele. Ngoko ke musa ukucinga ukuba ugqirha wakho uyayazi imbali yakho yezonyango. Kungcono kwaye kukhuselekile ukuzisa ulwazi lwakho.
Ukuba uthatha umgudu omncinci kwaye ulungiselele ngaphambi kokuba uye kugqirha, ungazuza lukhulu kuloo ntlanganiso. Iya kuba luncedo olukhulu kungekuphela kuwe, kodwa nakugqirha okunyangayo.
Umyalezo Wokuya Ekhaya
- Ngalo lonke ixesha xa usiya kugqirha ukuze ufumane i-hATTR, yilungiselele kwangaphambili.
- Gcina iimpawu zakho, onke amayeza owasebenzisayo, iingxelo zovavanyo (ingakumbi iingxelo zovavanyo lwemfuza), kunye nembali yezonyango yosapho kwifayile enye.
- Bhala imibuzo yakho ephepheni kwangaphambili, kuba usenokuyilibala. Musa ukoyika ukuza nomntu ukuze akuncede.
- Ulwazi olunika lona luya kunceda kakhulu ugqirha ukuba aqonde imeko yakho aze akunike unyango olungcono.
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