Ukutyelela ugqirha ngamanye amaxesha kunokuba ngamava anzima kakhulu. Kungavakala ngathi akukho xesha laneleyo lokubuza yonke imibuzo neenkxalabo zethu. Oku kuyinyani ngakumbi xa kufikwa kwiimeko ezinzima nezingaqhelekanga ezifana ne -hATTR amyloidosis. Ke ngoko, kubalulekile ukulungiselela uluhlu lwemibuzo ofuna ukuyibuza ngaphambi kokuba uye kugqirha wakho. Oku kuya kukunceda ufumane yonke into ekufuneka uyazi kwaye ufumane unyango olulungele wena.
Okokuqala, masifunde kakuhle ngesi sifo.
Ukuqonda kakuhle imeko yakho kubaluleke kakhulu kunyango, ngoko ungathandabuzi ukubuza le mibuzo.
Ndifanele ndinyange ntoni ngeempawu zam?
Xelela ugqirha wakho ngazo zonke iimpawu zakho . Unokucinga ukuba ezinye zazo azinanto yakwenza ne-hATTR. Kodwa kubalulekile ukubaxelela zonke. Ugqirha wakho angakuxelela indlela yokunyanga ezi mpawu kunye neempawu ekufuneka uzibeke phambili. Kwakhona, ukuba uthatha amayeza ahlukeneyo kwimpawu nganye, banokuchaza indlela amayeza achaphazela ngayo elinye nelinye (ubudlelwane bamayeza).
Isifo sam sikuliphi inqanaba?
Kukho amanqanaba amane aphambili esifo se-hATTR .
- Inqanaba 0: Akukho zimpawu.
- Inqanaba lokuQala: Iimpawu ezincinci, kodwa ungahamba.
- Inqanaba lesiBini: Ukuhamba kufuna uncedo, kwaye kuvela iingxaki ezininzi emzimbeni wonke.
- Inqanaba lesiThathu: Kufuneka kusetyenziswe isitulo esinamavili okanye umntu elele ebhedini, kwaye iingxaki ezinkulu zeemvakalelo, ukuhamba komzimba, kunye neemvakalelo zenzeka emzimbeni wonke.
Ukwazi ukuba ukwinqanaba elingakanani kwenza kube lula kugqirha ukuba acwangcise unyango ngokufanelekileyo.
Ngawaphi amalungu omzimba am achaphazelekileyo yile nto?
I-hATTR yimeko yelifa. Kule meko, iproteni ebizwa ngokuba yi -transthyretin iyaqhekeka ize ihlangane ukuze yenze ii-amyloid deposits kwizitho zomzimba. Uvavanyo lunokubonisa ukuba ii-amyloid deposits zikhona entliziyweni yakho okanye kwezinye izitho zomzimba. Olu lwazi lubalulekile kuba unyango olufumanayo luhlala luxhomekeke kuhlobo lwe-amyloid kunye nezitho ezikuyo .
Ngaba intsapho yam kufuneka ivavanywe ngokwemfuza?
Ngenxa yokuba esi sisifo esidluliselwa kwilifa, emva kokuba ufunyaniswe ukuba unesifo, unokufuna ukufumanisa ukuba kukho omnye umntu kusapho lwakho onaso na. Ukuba unabantwana, unokufuna ukuqwalasela ukubavavanya i-gene yabo. Unyango luphumelela ngakumbi ukuba i-hATTR ifunyaniswa kwangethuba.Ngoko ke, ukwazi oku kunokukunika ithuba lokunceda elinye ilungu losapho.
Ziziphi iimpawu ezifuna utyelelo olungxamisekileyo esibhedlele?
Nangona i-hATTR inokubangela iimpawu ezahlukeneyo, kubalulekile ukwazi ukuba wenze ntoni xa kukho imeko engxamisekileyo. Ngoko ke, qiniseka ukuba ubuza ugqirha wakho, "Zeziphi iimpawu ekufuneka ndiye kwiSebe leeNgxamiseko (ETU) ngoko nangoko?"
Izinto onokuzibuza malunga nonyango lwakho
Ngokuqonda ngokucacileyo indlela yonyango , ungakuphepha uloyiko olungeyomfuneko kunye namathandabuzo.
Ndingagqiba njani ukuba loluphi unyango olundilungeleyo?
Ugqirha wakho uza kucebisa unyango olusekelwe kwinqanaba lesifo sakho kunye neempawu zakho. Ngokukodwa, uza kujonga iingxaki zemithambo-luvo (i-polyneuropathy), ezinje ngokuba ndindisholo, ubuthathaka, okanye ukudumba kumacala omabini omzimba wakho, okanye iingxaki zemisipha yentliziyo (i-cardiomyopathy). Abanye abantu banokuba nazo zombini. Oku kuya kunceda ekwenzeni isicwangciso sonyango esikhethekileyo kuwe. Ukuba sele ufumana unyango, buza, "Ngaba ufuna ukuqhubeka nolu nyango okanye kufuneka wenze utshintsho?"
Ngaba kukho amayeza amatsha anokuthi andifanele?
Njengoko isayensi yezonyango iqhubela phambili, kukwavela unyango olutsha lwesi sifo. Amayeza amatsha amaninzi angene kwimarike kwiminyaka embalwa edlulileyo. Kukho amayeza ahlukeneyo afanelekileyo kumanqanaba ahlukeneyo esi sifo. Ngoko ke, ngokuxhomekeke kwinqanaba okulo, buza ugqirha wakho ukuba kukho iindlela ezintsha onokuzama.
Yintoni endimele ndiyilindele kwezi ndlela zonyango?
Ulwazi lunamandla. Ukwazi kwangaphambili ngemiphumo emibi enokubakho kunye neengozi zonyango oza kulufumana kuya kukunika amandla okujongana nazo ngaphandle kokukhathazeka.
Olu nyango luza kuthatha ixesha elingakanani?
Akukho nyango lwe-haATTR, ngoko ke unyango lunokuba lolobomi bonke. Nangona kunjalo, ugqirha wakho uya kukwazi ukukunika umbono ocacileyo wokuba uza kufuna unyango ixesha elingakanani, ngokusekelwe kwinqanaba lakho lesifo, iimpawu, kunye nezinye izinto.
Zithini iziphumo ebezingalindelekanga ezinokubakho zezi mithi?
Oku kuyahluka kunyango ngalunye. Umzekelo, iyeza elibizwa ngokuba yi-`inotersen (Tegsedi)` lisenokungabi lolona khetho lokuqala kuba linokubangela iziphumo ebezingalindelekanga ezinzulu. Nangona kunjalo, amayeza afana ne-`tafamidis (Vyndamax, Vyndaqel)` awabonakali ukuba aneziphumo ebezingalindelekanga ezibalulekileyo kwizigulana ezine-`cardiomyopathy` kuvavanyo. Xa ugqirha wakho ekubhalela iyeza, qiniseka ukuba ubuza ngeziphumo ebezingalindelekanga ezinokubakho.
Zeziphi iimvavanyo ekufanele ndizenze kwixesha elizayo?
Esi sifo siyaqhubeka ngokuhamba kwexesha, ingakumbi ukuba asinyangwa. Ngoko ke kuya kufuneka wenze uvavanyo rhoqo ukuze ulandelele inkqubela yesi sifo. Fumanisa ukuba zeziphi iimvavanyo ekufuneka uzenze kwaye nini.
Ndingayazi njani ukuba olu nyango luphumelele?
Iqela lezonyango elikunyangayo liza kukubona rhoqo. Liza kusebenzisa iimvavanyo ukujonga isifo, kwaye liza kukucela ukuba ubazise ngeempawu zakho ukuze babone ukuba unyango luyasebenza na.
Ubadibanisa njani oogqirha abaziingcali kunye neminye imisebenzi?
Ngenxa yokuba esi sifo sichaphazela amalungu amaninzi emzimbeni, kuya kufuneka ubone iingcali ezininzi.
| Ugqirha oyingcali | Indawo enempembelelo |
|---|---|
| Ingcali yentliziyo | Iingxaki ezinxulumene nentliziyo |
| Ingcali yeHematologist | Iingxaki ezinxulumene negazi |
| Ingcali yezifo zengqondo | Iingxaki zobuchopho kunye nemithambo-luvo |
| Ingcali yezifo zesisu | Iingxaki zendlela yokugaya ukutya kunye nesibindi |
| Ugqirha we-Oncologist | Ngenxa yokuba i-amyloidosis inokunxulunyaniswa neemeko zomhlaza |
| Umcebisi wezeMvelo | Ukucebisa ngempembelelo yemfuza edluliselwe kwizizukulwana ngezizukulwana kunye nemingcipheko kusapho |
Unyango luhambelana njani phakathi kwaba gqirha?
Ekubeni uza kubona oogqirha abaninzi abahlukeneyo, kubalulekile ukuba bonke basebenze njengeqela, babelane ngolwazi omnye komnye. Usenokukwazi ukufumana unyango kwiziko le-amyloidosis, apho bonke aba ngcali basesibhedlele esinye. Ukuba akunjalo, qiniseka ukuba ubuza, "Ulwazi luza kwabelwana njani phakathi kwaba gqirha? Ngaba iziphumo zam zovavanyo ziya kwabelwana ngazo phakathi kwabo bonke, kwaye ngaba baza kugqiba ukuba yintoni elungileyo kum?"
Ngubani endifanele ndimbuze ngezimali zam kunye ne-inshorensi yam?
Ungadinga unyango oluninzi koku. Ngoko ke, buza ugqirha wakho, umongikazi, okanye umphathi wesibhedlele, "Ngaba i-inshurensi yam iza kuzihlawulela ezi ndleko? Ngubani endifanele ndithethe naye ngale nto?" Ukuba ufuna uncedo lwemali, buza ngabantu abanokukunceda ngale nto.
Umyalezo Wokuya Ekhaya
- Ngaphambi kokuba uye kugqirha, bhala uluhlu lwemibuzo ofuna ukuyibuza. Oku kuya kuba luncedo olukhulu kuwe.
- Xelela ugqirha wakho ngokunyanisekileyo nokuba uneempawu ezincinci kangakanani na, ngaphandle kokuzifihla.
- Yazi kakuhle inqanaba lesifo sakho kunye namalungu omzimba achaphazelekileyo.
- Thetha malunga nokuba amanye amalungu osapho nawo ayalufuna na uvavanyo lwemfuza.
- Buza ngononophelo ngeendlela zonyango, iziphumo zazo ezingezizo, kunye nendlela yokwazi ukuba unyango luphumelele na.
- Buza ukuba unyango lwakho luza kulungelelaniswa njani phakathi kweengcali ezahlukeneyo.
- Ungaze woyike ukuthetha ngeendleko zonyango kunye noncedo lwemali.
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