Ngaba ugqirha wakho ukuxelele okanye uxelele umntwana wakho ngale yeza elibizwa ngokuba yiCasimersen? Okanye mhlawumbi ukhe waliva eli gama ndaweni ithile, kodwa awazi ukuba liyintoni kanye kanye, lenzelwe ntoni, kwaye lisebenza njani? Enyanisweni, eli asiloyeza elithethwa rhoqo kwilizwe lethu. Ngoko ke kuqhelekile ukuba nemibuzo ngalo, uzive usoyika kancinci. Ngoko ke ungoyiki. Namhlanje, siza kuthetha ngale yeza elibizwa ngokuba yiCasimersen, ukuze sifumane iimpendulo kuyo yonke imibuzo onayo engqondweni yakho, ngokulula, ngesiSinhala osiqondayo.
Ngamafutshane, yintoni iCasimersen?
ICasimersen liyeza elithile elisetyenziselwa ukunyanga imeko ebizwa ngokuba yiDuchenne muscular dystrophy (DMD) . Ikwaziwa ngegama lophawu lwe-AMONDYS 45.
Ngoku usenokuba uzibuza ukuba, yintoni iDuchenne Muscular Dystrophy (DMD)? Yimeko yemfuza, oko kuthetha ukuba ikhona xa umntu ezalwa. Ibangela ukuba izihlunu zomzimba zibe buthathaka kancinci kancinci kwaye ziphele. Le meko ichaphazela kakhulu abafana.
Cinga ngezihlunu zomzimba wethu njengodonga lwezitena. Ezo zitena zifuna umaleko wesamente ukuze zibambe kwaye zihlale zomelele. Ngokufanayo, iproteni ekhethekileyo ebizwa ngokuba yi-dystrophin ibalulekile ukugcina iiseli kwimisipha yethu zomelele kwaye ziphilile. Kumntu one-DMD, umzimba awuvelisi le protein ye-dystrophin, okanye uvelisa kancinci kakhulu kuyo. Ngoko ke, njengodonga olungenasamente, izihlunu ziqala ukuba buthathaka kancinci kancinci.
Kulapho ke iyeza elibizwa ngokuba yiCasimersen lingena khona. Eli yeza lingena emzimbeni, lisebenza kwinqanaba lemfuza, kwaye linceda ekwandiseni imveliso yeproteni ye-dystrophin engekhoyo. Xa ubungakanani be-dystrophin emzimbeni bukhula, izinga apho izihlunu zibuthathaka liyancipha, kwaye amandla azo anokuphucula ngandlela ithile.
Into ebalulekileyo kukuba oku akuyonyango lwe-DMD. Nangona kunjalo, kunokunceda ukulawula umonakalo kwimisipha ebangelwa sisifo kwaye kuphucule umgangatho wobomi bomguli.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba usebenzise eli yeza
Njengakweminye imithi, kubalulekile ukuxelela ugqirha wakho ngembali yakho epheleleyo yempilo ngaphambi kokuba uqalise unyango lweCasimersen. Oku kungenxa yokuba ugqirha uza kusebenzisa ulwazi olunikileyo ukuze agqibe ukuba eli yeza likulungele na kwaye likhuselekile na. Qiniseka ukuba ubaxelela ngezi zinto ngokukodwa.
- Isifo sezintso: Ukuba unesifo sezintso, qiniseka ukuba uxelela ugqirha wakho ngaso. Eli yeza lisuswa emzimbeni ngezintso. Ngoko ke, ukuba izintso zakho azisebenzi kakuhle, kufuneka ulumke kakhulu.
- Ii-Allergy: Sixelele ukuba wakha waba ne-allergy kwiCasimersen, naliphi na elinye iyeza, ukutya, okanye iidayi ezithile. Kubalulekile ukusixelela ngazo naziphi na ii-allergy, nokuba zincinci ezinokubakho.
- Ukukhulelwa: Ukuba ukhulelwe okanye uzama ukukhulelwa, thetha nogqirha wakho ngaloo nto.
- Ukuba ungumama oncancisayo: Ukuba ungumama oncancisayo, qiniseka ukuba wazise ugqirha wakho.
Musa ukuzifihla ezi zinto. Impumelelo yonyango kunye nokhuseleko lwakho kuxhomekeke ekubeni uthetha njani ngokukhululekileyo nogqirha.
Eli yeza linikwa njani emzimbeni?
I-Casimersen ayiloyeza elithathwa njengepilisi. Inikwa umzimba ngokufaka inaliti emthanjeni . Oku kukwabizwa ngokuba yi-'Intravenous infusion'.
Oku akuyonto onokuyenza ekhaya. Olu nyango lunikwa kuphela esibhedlele okanye eklinikhi, phantsi kweliso elithe ngqo likagqirha, umongikazi, okanye ingcali yezempilo eqeqeshiweyo. Ngoko ke akukho nto inokubangela ixhala. Baza kuqinisekisa ukuba umzimba unikwa idosi efanelekileyo ixesha elifanelekileyo.
Xa unika abantwana eli yeza
Ekubeni i-DMD sisifo esifunyaniswa ebuntwaneni, olu nyango ludla ngokunikwa abantwana. Ngoko ke kukho izinto ezimbalwa ekufuneka uzilumkele xa unika umntwana eli yeza. Ngoko ke ngaphambi kokuba uqale olu nyango kumntwana wakho, buza ugqirha wakho yonke imibuzo onayo ngalo.
Kuthekani ukuba ndithatha amayeza amaninzi kakhulu?
Ekubeni oku kunikwe esibhedlele, amathuba okuba oku kwenzeke mancinci kakhulu. Nangona kunjalo, masithi ngandlela ithile uninzi lwale mayeza lungene emzimbeni kunokuba kuyimfuneko. Ukuba oko kuyenzeka, kufuneka kuthathwe amanyathelo akhawulezileyo.
Xa kukho imeko engxamisekileyo, fowunela iZiko loLwazi lweZifo zeSizwe kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko . Ngaphandle koko, thatha isigulana usise kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane ngaphandle kokulibazisa.
Inqaku elibalulekileyo: Khumbula, eli yeza lelesigulana kuphela. Musa ukwabelana okanye ukunika omnye umntu eli yeza nangasiphi na isizathu.
Yintoni omawuyenze ukuba uphoswe yidosi?
Ukuze ufumane iziphumo ezilungileyo kolu nyango, kubaluleke kakhulu ukuthatha iidosi zakho ngemihla emiselweyo nangamaxesha amiselweyo. Ugqirha wakho uya kube ekunike imihla yokuza kuthatha amayeza akho. Qiniseka ukuba uyaya ngaloo mihla.
Ukuba awukwazi ukuya kwintlanganiso yakho ecwangcisiweyo ngenxa yesizathu esingxamisekileyo nesingenakuphepheka, nceda unxibelelane nogqirha wakho okanye nekliniki apho unyangwa khona ngoko nangoko.Baza kukucebisa ngento omawuyenze ngokulandelayo. Ungaze wenze izigqibo wedwa kwaye ungaze uyeke ukuya kugqirha.
Ngaba kukho naziphi na iziphumo ebezingalindelekanga?
Njengayo nayiphi na iyeza, iCasimersen inokubangela ezinye iziphumo ebezingalindelekanga. Nangona kunjalo, ayinguye wonke umntu oza kuzifumana zonke ezi ziphumo ebezingalindelekanga. Abanye abantu basenokungazifumani kwaphela iziphumo ebezingalindelekanga. Into ebalulekileyo kukwazi ukuba zeziphi ezi ziphumo ebezingalindelekanga kwaye zeziphi ezinobungozi.
Ukuze kube lula ukuqonda, masizahlule ezi ziphumo zibe ngamacandelo amabini.
| Imiphumela | Inkcazo kunye nento omawuyenze |
|---|---|
| Iziphumo ebezingalindelekanga ezinzulu ekufuneka zixelwe kugqirha ngoko nangoko | |
| Iimpendulo ze-allergy | Ezi zinokwenzeka ngokukhawuleza. Ukuba ufumana naziphi na kwezi mpawu, ezinje ngamaqhakuva abomvu eluswini, ukurhawuzelela umzimba wonke, ukudumba kobuso, imilebe, ulwimi okanye umqala, okanye ubunzima bokuphefumla, funa ingcebiso kagqirha ngoko nangoko . |
| Ukulimala kwezintso | Ukuba ubona naziphi na iimpawu ezinje ngokuncipha ngequbuliso komthamo womchamo owuvelisayo, ukudumba kwamaqatha akho, izandla, okanye iinyawo, yazisa ugqirha wakho ngoko nangoko. Ugqirha wakho uhlala ekujonga oku ngokwenza uvavanyo lwegazi nomchamo. |
| Iziphumo ebezingalindelekanga ezingaqhelekanga ukuba azikhathazeki, kodwa kufuneka zixelwe kugqirha wakho ukuba ziyaqhubeka | |
| Ukukhwehlela kunye nomphimbo obuhlungu | Kusenokubakho ukukhwehlela okuqhelekileyo okanye umphimbo obuhlungu kancinci. |
| Ifiva | Usenokuziva unomkhuhlane omncinci. |
| Intloko ebuhlungu kunye nentlungu yamalungu | Usenokuba nentloko ebuhlungu okanye iintlungu zamalungu. |
| Iimpawu ezifana nokubanda | Usenokuba neempawu zomkhuhlane, ezifana nempumlo egobhozayo kunye nokuxinana kwempumlo. |
Olu luhlu lusenokungabandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ufumana naziphi na iimpawu ezingaqhelekanga okanye ezikhathazayo, ungabi nazintloni zokuthetha nogqirha wakho ngazo.
Ngaba kukho naluphi na unxibelelwano olukhoyo namanye amayeza?
Ngokwendlela eyaziwayo ngayo ngoku, iCasimersen ayizange ibikwe ukuba ibangela ukudibana okukhulu namanye amayeza.
Nangona kunjalo, ukuze ukhuseleke, xelela ugqirha wakho ngazo zonke iziyobisi ozisebenzisayo (kuquka amayeza kagqirha, iivithamini, amayeza esintu, amayeza e-Ayurvedic, kunye nezongezo). Kubalulekile ukuxelela ugqirha wakho ukuba uyatshaya okanye usela utywala.
Ungayigcina njani iyeza?
Asinto omele uyicinge le. Kuba awunakuyithatha le yeza uye nayo ekhaya. Ekubeni inikwa esibhedlele okanye eklinikhi kuphela, bona ngokwabo bayigcina ngokukhuselekileyo kubushushu obufanelekileyo.
Umyalezo Wokuya Ekhaya
- I-Casimersen liyeza elithile elinyanga imeko yemfuza ebizwa ngokuba yiDuchenne Muscular Dystrophy (DMD).
- Oku kusebenza ngokunyusa imveliso yeproteni ebizwa ngokuba yi-dystrophin, enganelanga emzimbeni, nokulawula ubuthathaka bemisipha.
- Oku kunikwa ngokufaka inaliti emthanjeni, kwaye kwenziwa kuphela esibhedlele okanye eklinikhi, phantsi kweliso likagqirha.
- Ngaphambi kokuba uqale unyango, xelela ugqirha wakho lonke ulwazi lwakho lwempilo (ingakumbi isifo sezintso kunye ne-allergies).
- Ukuba ubona naziphi na iimpawu ze-allergy enzima (ukudumba kwesikhumba, ukudumba) okanye iziphumo kwizintso (ukuncipha kokuchama, ukudumba), yazisa ugqirha wakho ngoko nangoko .
- Sela amayeza akho ngemihla namaxesha achazwe ngugqirha wakho. Ukuba kukho nayiphi na ingxaki, nceda usazise kwangaphambili.
- Thetha ngokukhululekileyo nogqirha wakho ngayo nayiphi na imibuzo okanye uloyiko onalo.
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