Xa ugqirha ekuxelela ukuba umntwana wakho unesifo esingaqhelekanga esibizwa ngokuba yiMucopolysaccharidosis type VII, okanye iMPS VII (Sly Syndrome) ngamafutshane, wena, njengomama okanye utata, kumele ukuba wothukile kakhulu kwaye ukhathazekile. Kwangaxeshanye, xa weva ngesitofu esibizwa ngokuba yiVestronidase alfa (igama lophawu: MEPSEVII) njengonyango loku, kufuneka ube nemibuzo emininzi engqondweni yakho. Kuqhelekile ukucinga izinto ezinje, "Lithini eli yeza? Ngaba liza kumnceda umntwana? Ngaba kukho naziphi na iziphumo ebezingalindelekanga?" Musa ukoyika. Namhlanje, siza kuthetha ngeli yeza ngolwimi olulula onokuluqonda, ngendlela enobuhlobo.
Kalula nje, yintoni iVestronidase alfa?
Cinga ngemizimba yethu njengomzi-mveliso omkhulu. Lo mzi-mveliso unabasebenzi abakhethekileyo abenza imisebenzi eyahlukeneyo. Aba basebenzi sibabiza ngokuba 'ziienzyme'. Kumntwana onemeko efana ne-MPS VII, umzimba awuvelisi i-enzyme ethile ebalulekileyo, okanye uvelisa encinci kakhulu kuyo.
I-Vestronidase alfa lunyango olujongana nokusilela . Ngokuchanekileyo, lunyango lokutshintshwa kwee-enzyme (ERT) . Okwenziwa lolu gonyo kukunika umntwana i-enzyme engaveliswanga emzimbeni ngokwendalo. Xa le enzyme ingena emzimbeni, iyawaphula izinto eziyingozi eziqokelelana emzimbeni kwaye incede ekulawuleni iimpawu.
Eyona nto ibalulekileyo kukuba olu asilonyango lwesi sifo. Nangona kunjalo, olu nyango lunokunceda ekulawuleni iimpawu, luphucule umgangatho wobomi bomntwana, kwaye lwenze umntwana aphile ubomi obutofotofo ngakumbi.
Ungayinika njani le yeza umntwana?
Eli yeza alilophilisi elinokuginywa okanye lifakwe ekhaya. I-Vestronidase alfa inikwa njenge -infusion, njenge-saline, emthanjeni .
Le nkqubo ihlala yenzeka esibhedlele okanye eklinikhi , phantsi kweliso elibukhali loogqirha nabahlengikazi. Ingathatha iiyure ezininzi. Iqela lezonyango lihlala lijonga imeko yomntwana (isantya sentliziyo, uxinzelelo lwegazi, njl.njl.) ngelixa umntwana efumana olu nyango. Ngoko ke akufuneki ukhathazeke ngokhuseleko lomntwana wakho.
Nangona olu nyango lunokunikwa nakwiimveku ezisandul’ ukuzalwa, kukho amanyathelo akhethekileyo okhuseleko ekufuneka alandelwe ngokuxhomekeke kubudala kunye nemeko yomntwana. Ugqirha womntwana wakho uza kukwazisa ngale nto.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale unyango
Ngaphambi kokuba uqale olu nyango, kubaluleke kakhulu ukuxelela ugqirha ulwazi malunga nempilo yomntwana wakho. Olu lwazi luza kuqinisekisa indlela umntwana aza kunyangwa ngayo kunye namanyathelo okhuseleko amele athathwe.
| Izinto ekufuneka zixelelwe | Kutheni oko kubalulekile? |
|---|---|
| Naluphi na uhlobo lwe-allergy | Qiniseka ukuba uxelela ugqirha wakho ukuba une-allergies kwi-vestronidase alfa, amanye amayeza, ukutya, iidayi, okanye izithinteli. Oku kuya kunceda ukuthintela ii-allergies ezinkulu. |
| Ukukhulelwa okanye ukuzama ukukhulelwa | Ukuba umntu ofumana unyango ngumntu oselula, kubaluleke kakhulu ukubazisa ukuba ukhulelwe okanye uzama ukukhulelwa. |
| Ukuncancisa | Ukuba umama ufumana unyango, kufuneka azise ugqirha ukuba uyamncancisa umntwana na. |
Zeziphi izinto ekufuneka sizilumkele xa sinika amayeza?
Lumka xa kukho iimpembelelo ezimbi kakhulu kwi-allergy.
Eli yeza linokubangela ukusabela okunamandla kwe-allergy kwabanye abantwana. Ukunciphisa le ngozi, ugqirha wakho unokugqiba ekubeni akunike amanye amayeza (umzekelo, ii-antihistamines ezifana ne-piritan, ii-reducers zokunciphisa umkhuhlane) malunga neyure ngaphambi kokuba unike i-Vestronidase alfa vaccine. Ngoko ke landela imiyalelo kagqirha wakho ngokuchanekileyo.
Idosi ephosiweyo
Kubaluleke kakhulu ukufumana olu gonyo ngexesha elifanelekileyo. Ukuba ngesizathu esithile awukwazi ukuya esibhedlele ngomhla omiselweyo, fowunela ugqirha wakho ngoko nangoko umxelele, ukuze akwazise ngomhla olandelayo ozayo.
Ukugqithisa
Ekubeni eli yeza linikwa esibhedlele, amathuba okuba lisetyenziswe ngokugqithisileyo aphantsi kakhulu. Nangona kunjalo, ukuba oku kuyenzeka okanye ukrokrela, yazisa iqela lezonyango ngokukhawuleza. Ukuba uneengxaki ekhaya, fowunela iZiko loLwazi lweePoison kwiSibhedlele sikaZwelonke saseColombo . Okanye umse umntwana kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
Iingxaki ngamanye amayeza
Akukafundwa kakuhle indlela eli yeza elisebenzisana ngayo namanye amayeza. Ngoko ke, kubaluleke kakhulu ukwazisa ugqirha wakho malunga namanye amayeza, iivithamini, amayeza esintu, okanye izongezo umntwana wakho azithathayo. Kwakhona, musa ukuqala amayeza amatsha ngaphandle kokujonga ugqirha womntwana wakho kuqala.
Zithini iziphumo ebezingalindelekanga ezinokubakho zale yeza?
Njengayo nayiphi na iyeza, i-Vestronidase alfa vaccine inokubangela ezinye iziphumo ebezingalindelekanga. Nangona uninzi lwazo zincinci, kukho izinto ezithile ekufuneka siziqaphele ngokukodwa.
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka uzixele kugqirha wakho okanye kumongikazi wakho ngoko nangoko | |
|---|---|
| Iimpawu eziqatha zokunganyamezelani komzimba | Ukurhawuzelelwa lusu, i-eczema, ukurhawuzelelwa lusu, ukurhawuzelelwa, ukudumba kwemilebe, ulwimi okanye ubuso. |
| Ubunzima bokuphefumla | Ubunzima bokuphefumla, ukuqina kwesifuba, iingxolo ezingaqhelekanga xa uphefumla. |
| Uxinzelelo lwegazi oluphantsi | Ukuba nesiyezi, amehlo aluhlaza okwesibhakabhaka, phantse ukuba ulahlekelwe yingqondo. |
| Iziphumo ebezingalindelekanga ezihlala zingeyongozi, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Urhudo | Ukuqunjelwa. |
| Ukungonwabi kwindawo yokutofa | Intlungu, ukuba bomvu, okanye ukudumba kwindawo ejikelezileyo apho kufakwe khona inaliti. |
Olu luhlu alubandakanyi zonke iziphumo ebezingalindelekanga. Ukongeza, ukuba ubona into engaqhelekanga, ungaze ungathandabuzi ukuthetha nogqirha wakho ngayo.
Umyalezo Wokuya Ekhaya
- I-Vestronidase alfa lunyango lokutshintsha ii-enzyme olulawula iimpawu zesifo esingaqhelekanga esibizwa ngokuba yi-MPS VII (Sly Syndrome). Ayilonyango lwesi sifo.
- Olu nyango lunikwa njengokufakwa emthanjeni esibhedlele, phantsi kweliso likagqirha.
- Ngaphambi kokuba uqale unyango, kubalulekile ukwazisa ugqirha ngazo zonke iingxaki zokunganyamezelani komntwana wakho kunye nezinye iingxaki zempilo.
- Ukuba ufumana iimpawu ezinobungozi zokunganyamezelani komzimba ezifana nokudumba kobuso, ubunzima bokuphefumla, okanye ukurhawuzelela kolusu ngexesha lonyango, yazisa iqela lezonyango ngoko nangoko.
- Ungaphoswa lusuku lwakho lonyango olucwangcisiweyo nangasiphi na isizathu. Ukuba uphoswa lusuku, fowunela ugqirha wakho ngoko nangoko.
- Ukuba unemibuzo okanye iinkxalabo malunga nale mithi, thetha ngayo nogqirha wakho.
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