Ngaba ugqirha wakho ukuxelele okanye umntu kusapho lwakho ukuba unesifo sePompe kwaye kufuneka uqale ukuthatha isitofu esibizwa ngokuba yiAvalglucosidase Alfa njengonyango? Kuqhelekile ukuba uzive usoyika kwaye unexhala xa usiva igama elinje. Kodwa ungakhathazeki. Kweli nqaku, siza kuthetha ngokuba yintoni eli yeza, yintoni eliyenzayo, kunye nento ekufuneka siyilumkele.
Yintoni kanye kanye le yeza? (Yintoni i-Avalglucosidase Alfa?)
Ngamafutshane, i-Avalglucosidase Alfa yikopi eyenziwe ngumntu ye-enzyme eveliswa ngokwendalo emizimbeni yethu. Ithengiswa phantsi kwegama elithi Nexviazyme . Ikwiklasi yonyango olubizwa ngokuba yi -Enzyme Replacement Therapy .
Cinga, isifo sikaPompe sisifo apho isiphene semfuza emzimbeni wethu sinciphisa okanye siphelisa ngokupheleleyo ukuveliswa kwe-enzyme ethile. Xa le enzyme ingekho, uhlobo lweswekile olubizwa ngokuba yi-glycogen luqala ukuqokelelana ngaphakathi kwiiseli zethu, ingakumbi iiseli zemisipha. Oku kuqokelelana kubangela iimpawu ezinjengobuthathaka bemisipha kunye nobunzima bokuphefumla.
Ngoko ke into eyenziwa lolu gonyo lwe-Avalglucosidase Alfa kukunika umzimba i-enzyme engekhoyo evela ngaphandle. Kufana nokugcwalisa itanki ngamanzi avela ngaphandle. Kodwa oku akunakuphilisa ngokupheleleyo isifo. Nangona kunjalo, olu nyango lunceda kakhulu ekulawuleni umonakalo obangelwe sisifo kunye nokunciphisa iimpawu kunye nokwenza ubomi bube lula.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uthathe amayeza
Kubaluleke kakhulu ukuxoxa ngembali yakho yempilo epheleleyo nogqirha wakho ngaphambi kokuba uqale olu nyango. Kufuneka ukhankanye ngakumbi nayiphi na kwezi meko zilandelayo:
| Imeko yempilo okanye ithuba | Kutheni ufanele uxelele? |
|---|---|
| Isifo sentliziyo okanye ukungaphumeleli kwentliziyo | Ngenxa yokuba eli yeza linokuchaphazela ulungelelwaniso lolwelo emzimbeni, kubalulekile ukuba uqaphele iimeko zentliziyo. |
| Isifo semiphunga | Ukuba kukho umngcipheko wokuba nobunzima bokuphefumla, iqela lezonyango kufuneka lilumke kakhulu ngaloo nto. |
| Ukunganyamezelani kwamanye amayeza, ukutya, okanye izinto | Kubalulekile ukwazi ukuba une-allergy kwi-Avalglucosidase Alfa okanye nakweyiphi na izithako zayo. |
| Ukuba ukhulelwe okanye uzama ukukhulelwa | Ufanele uxoxe nogqirha wakho ngokhuseleko lwale mithi ngexesha lokukhulelwa. |
| Ukuba umntwana uncanciswa | Kubalulekile ukufuna iingcebiso zonyango malunga nokuba iyeza lidluliselwa ebantwaneni ngobisi lwebele na. |
Linikwa njani eli yeza?
I-Avalglucosidase Alfa ayiloyeza onokulithatha ekhaya. Liyeza elinikwa ngesisombululo setyuwa emthanjeni (i-intravenous infusion) . Oku kuthetha ukuba kuya kufuneka uye esibhedlele okanye kwikliniki ekhethekileyo ukuze ufumane olu nyango. Apho, ugqirha okanye umongikazi oqeqeshiweyo uya kukunika inaliti.
- Kubantwana abancinci: Olu nyango ngamanye amaxesha lunikwa abantwana abangaphezu konyaka omnye ubudala. Nangona kunjalo, isigqibo senziwa ngugqirha wabantwana. Kulandelwa amanyathelo akhethekileyo okhuseleko koku.
- Kuthekani ukuba ndiphoswe yidosi? Kubaluleke kakhulu ukusela eli yeza kanye ngomhla ocwangcisiweyo. Ukuba uphoswe ngumhla ocwangcisiweyo, fowunela ugqirha wakho ngoko nangoko umxelele ukuze akwazi ukucwangcisa elinye idinga.
- Kuthekani ukuba idosi inyusiwe? Ekubeni oku kunikwe esibhedlele, amathuba okuba oku kwenzeke aphantsi kakhulu. Nangona kunjalo, ukuba ucinga ukuba uthathe amayeza amaninzi kakhulu, kufuneka wazise iqela lezonyango ngoko nangoko. Okanye, ungatsalela umnxeba iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) .
Izinto ekufuneka uzilumkele xa usebenzisa iyeza
Emva kokuba uqalile unyango, ugqirha wakho uza kukujonga rhoqo ukuze abone ukuba unjani na. Qiniseka ukuba uya kwezi klinikhi. Ukuba iimpawu zakho aziphucuki okanye zibonakala zisiba mandundu, xelela ugqirha wakho.
Kubalulekile: Eli yeza linokubangela ukusabela okunzulu kwe-allergy kwabanye abantu. Ukunciphisa lo mngcipheko, ugqirha wakho unokukunika amanye amayeza (njengeyeza elibizwa ngokuba yi-piritan) ngaphambi kokuba akunike eli gonyo. Ngoko ke landela imiyalelo kagqirha wakho ngokuchanekileyo.
Ngaba iya kusebenzisana namanye amayeza?
Okwangoku akukho ngxelo zichaza ukusebenzisana okukhulu phakathi kwe-Avalglucosidase Alfa kunye nezinye iziyobisi. Nangona kunjalo, qiniseka ukuba uxelela ugqirha wakho ngazo zonke amayeza owasebenzisayo (kuquka amayeza ezinye izifo, iivithamini, amayeza ezityalo, kunye nezongezo) . Kwakhona xelela ugqirha wakho ukuba utshaya okanye usela utywala, njengoko ezinye zezi zinto zinokuchaphazela unyango lwakho.
Zithini iziphumo ebezingalindelekanga ezinokubakho zeyeza?
Njengayo nayiphi na iyeza, eli linokuba nemiphumo emibi. Kodwa ayinguye wonke umntu oyifumanayo. Masiwahlule la mayeza abe ngamacandelo amabini.
| Iziphumo ebezingalindelekanga ekufuneka zixelwe kugqirha ngoko nangoko | |
|---|---|
| Iimpendulo ze-allergy | Ukurhawuzelela kwesikhumba, ukurhawuzelela, ukudumba kobuso, imilebe okanye ulwimi. |
| Ubunzima bokuphefumla | Ukuphefumla ngokukhawuleza, ukuphefumla ngokukhawuleza. |
| Iintlungu zesifuba | Ukuziva uxinene okanye ukuxinana esifubeni. |
| Uxinzelelo lwegazi oluphantsi | Ukuba nesiyezi, ukubona izinto ezingacacanga, ukuziva ngathi ungawa xa umi, ukudinwa kakhulu. |
| Ukuhlanjwa ngamanzi | Ubomvu ngequbuliso kunye nobushushu ebusweni nasentanyeni. |
| Ngokwesiqhelo ayisiyongxaki inzulu (kodwa xelela ugqirha wakho ukuba iyaqhubeka) | |
| Intloko ebuhlungu | Intloko ebuhlungu eqhelekileyo. |
| Isicaphucaphu | Ukuziva ngathi uhlanza. |
| Urhudo | Ukuqunjelwa. |
| Intlungu yemisipha okanye yamalungu | Intlungu kwizihlunu okanye kumalungu. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ufumana into engaqhelekanga, ungoyiki ukuthetha nogqirha wakho ngayo.
Umyalezo Wokuya Ekhaya
- I-Avalglucosidase (Nexviazyme) lunyango lokutshintsha ii-enzyme olusetyenziselwa ukunyanga isifo sikaPompe. Ayinyangi esi sifo, kodwa ilawula iimpawu.
- Eli yeza linikwa esibhedlele njengenaliti emthanjeni.
- Ngaphambi kokuba uqale unyango, xelela ugqirha wakho ngazo zonke iimeko zakho zempilo kunye namanye amayeza owasebenzisayo.
- Qaphela ukuba kukho iimpembelelo ezinobungozi xa ufumana iyeza lokugonya. Ukuba ufumana iimpawu ezifana nobunzima bokuphefumla okanye ukudumba kobuso, yazisa iqela lezonyango ngoko nangoko.
- Kubaluleke kakhulu ukufumana unyango ngexesha. Musa ukulibazisa unyango nangasiphi na isizathu. Thetha nogqirha wakho ukuba uneengxaki.
- Ungaze ungathandabuzi ukubuza ugqirha wakho ngayo nayiphi na imibuzo okanye iinkxalabo onokuba nazo.
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