Isifo sikaFabry sisifo esingaqhelekanga, esibangelwa yimfuza esenzeka ngenxa yokunqongophala kwe-enzyme ebaluleke kakhulu emzimbeni wethu. Oku kunokuchaphazela iindawo ezahlukeneyo zomzimba, njengentliziyo, izintso, kunye nenkqubo yemithambo-luvo, ngokuhamba kwexesha. Ngoko ke, ukuba unesifo sikaFabry, ugqirha wakho usenokuba ukunike iyeza elibizwa ngokuba yiAgalsidase Beta. Namhlanje, siza kuthetha ngale yeza ngendlela elula necacileyo.
Luhlobo luni lonyango olu?
Ngamafutshane, i-Agalsidase Beta (igama lophawu elithi Fabrazyme) lunyango oluthatha indawo ye-enzyme engonelanga emzimbeni womntu onesifo sikaFabry. Ngokwezonyango, oku kubizwa ngokuba yi-'Enzyme Replacement Therapy' (ERT).
Eyona nto ibalulekileyo kukuba oku akuyonyango lwesifo. Nangona kunjalo, olu nyango lunokunceda kakhulu ekulawuleni umonakalo obangelwe sisifo emzimbeni nasekunciphiseni iimpawu.
Izinto ezibalulekileyo omele uzixelele ugqirha wakho
Ngaphambi kokuba uqale olu nyango, kubalulekile ukuba ugqirha azi izinto ezithile ngemeko yakho yempilo. Ngoko ke, ukuba unayo nayiphi na kwezi zilandelayo, qiniseka ukuba uxelela ugqirha ngayo.
- Ukuba unesifo sentliziyo .
- Ukuba wakha waba ne-allergy kwi-Agalsidase Beta, i-mannitol, okanye nayiphi na enye iyeza, ukutya, okanye idayi.
- Ukuba ukhulelwe , okanye ulindele ukukhulelwa kungekudala.
- Ukuba ungumama oncancisa umntwana wakho .
Ulisebenzisa njani eli yeza?
Eli yeza linikwa njenge-intravenous infusion (infusion) emthanjeni. Oku akuyonto onokuyenza ekhaya. Olu nyango lunikwa kuphela ngumboneleli wezempilo oqeqeshiweyo esibhedlele okanye eklinikhi, phantsi kweliso lezonyango.
Sebenzisa kubantwana abancinci
Kufuneka kuqatshelwe ngokukodwa xa kunikwa abantwana abancinci eli yeza. Ngamanye amaxesha linikwa abantwana abaneminyaka emi-2 ubudala, kodwa ngugqirha kuphela ohlola umntwana owenza isigqibo.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Ekubeni eli yeza linikwa esibhedlele, phantsi kweliso lengcali, amathuba okuba lisetyenziswe ngokugqithisileyo adla ngokuba mancinci kakhulu. Nangona kunjalo, ukuba ukrokrela ukuba kukho into eyenzekileyo, fowunela iZiko loLwazi lweePoisons kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko, okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) ekufutshane.
Yintoni omawuyenze ukuba uphoswe yidosi yeyeza?
Kubaluleke kakhulu ukusela amayeza ngosuku olucwangcisiweyo nangexesha elicwangcisiweyo lonyango. Ukuba ngesizathu esithile awukwazi ukuza esibhedlele ngosuku olucwangcisiweyo, yazisa ugqirha wakho okanye ikliniki yakho kwangaphambili kwaye ulungiselele olunye usuku.
Uligcina phi iyeza?
Ekubeni eli yeza linikwa esibhedlele okanye ekliniki, awuyi kuvunyelwa ukuba ulithathe uye nalo ekhaya okanye uligcine.
Amanye amayeza anokusebenza kunye nale mayeza
Amanye amayeza owasebenzisayo anokusebenzisana ne-Agalsidase Beta. Kungoko ke, kubaluleke kakhulu ukuxelela ugqirha wakho ngawo onke amayeza owasebenzisayo (amayeza amiselweyo, athengiswa ngaphandle kwemvume kagqirha, iimveliso zemifuno, iivithamini). Ingakumbi ukuba usebenzisa naliphi na kula mayeza alandelayo:
- i-amiodarone
- i-chloroquine
- i-gentamicin
- I-Hydroxychloroquine
- i-monobenzone
Olu luhlu alubandakanyi zonke iindlela ezinokwenzeka zokusebenzisa amayeza, ngoko ke kungcono ukuxelela ugqirha wakho ngayo yonke into oyithathayo.
Zithini iziphumo ebezingalindelekanga ezinokubakho?
Njengalo naliphi na iyeza, eli linokuba nemiphumo emibi. Eminye iyingozi, eminye ixhaphakile. Kubalulekile ukuzazi ezi zinto.
| Imiphumela | Inkcazo |
|---|---|
| Iziphumo ebezingalindelekanga ekufuneka zixelwe kugqirha okanye kumongikazi ngoko nangoko | |
| Iimpendulo Ezinzima Zokwaliwa Yi-Allergic | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe okanye ulwimi. |
| Ubunzima bokuphefumla | Ukuphefumla ngokukhawuleza, ukuphefumla ngokukhawuleza. |
| Intlungu yesifuba okanye ukuxinana | Ukuziva ngathi intliziyo yakho iyacinezelwa. |
| Ukubetha kwentliziyo | Ukuziva ngathi intliziyo yakho ibetha ngokukhawuleza okanye isantya sentliziyo yakho siyatshintsha. |
| Okunye | Ukudinwa kakhulu, ukudumba kwezandla okanye iinyawo, ukudakumba. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga (kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka) | |
| Uziva njani xa ufaka iyeza | Umkhuhlane okanye ukuziva ubanda. |
| Intlungu ngokubanzi | Iintlungu zomzimba, iintloko ezibuhlungu. |
| Iingxaki zenkqubo yokugaya ukutya | Isicaphucaphu, ukuhlanza, iintlungu zesisu okanye ukungakhululeki. |
| Imeko yengqondo | Ndiziva ndingonwabanga, ndixhalabile. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ufumana into eyahlukileyo, thetha nogqirha wakho ngayo.
Umyalezo Wokuya Ekhaya
- I-Agalsidase Beta (Fabrazyme) lunyango lokutshintsha iienzymes kwisifo sikaFabry. Nangona ingasinyangi ngokupheleleyo esi sifo, inokunceda kakhulu ekulawuleni iimpawu kunye neengxaki.
- Eli yeza linikwa ngemithambo esibhedlele, ngoko ke kubaluleke kakhulu ukufumana unyango ngexesha elifanelekileyo.
- Ufanele uxelele ugqirha wakho malunga neminye imithi oyithathayo, naziphi na ii-allergies onazo, kunye nokuba ukhulelwe okanye uncancisa.
- Ukuba ufumana naziphi na iimpawu ezinje ngobunzima bokuphefumla, iintlungu zesifuba, okanye ukurhawuzelela kwesikhumba ngexesha okanye emva nje kokutofa iyeza, xelela ugqirha wakho okanye umongikazi wakho ngokukhawuleza.
- Ukuba unemibuzo malunga nale yeza, ungoyiki okanye ungathandabuzi ukubuza ugqirha wakho.
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