Ngaba umntwana wakho okanye ilungu losapho lwakho line-Spinal Muscular Atrophy, okanye i-SMA ngamafutshane? Ukuba kunjalo, ugqirha wakho usenokuba ukuxelele ngeyeza elibizwa ngokuba yiRisdiplam. Xa usiva eli gama, usenokuba noloyiko oluncinci. Usenokuba nemibuzo emininzi engqondweni yakho, efana nokuthi, "Luhlobo luni lonyango olu, lunikwa njani, kuza kwenzeka ntoni?" Siza kuyiphendula yonke le mibuzo ngendlela elula onokuyiqonda. Masifumanise ukuba loluphi kanye kanye olu yeza.
Ngamafutshane, yintoni iRisdiplam?
I-Risdiplam (igama lophawu i-Evrysdi) liyeza elisetyenziselwa ukunyanga imeko ebizwa ngokuba yi-Spinal Muscular Atrophy (SMA). Liza njengesisombululo.
Ngoku masibone ukuba oku kuthetha ukuthini ngokwenene. Khawuthelekelele ukuba izihlunu zethu zifuna uhlobo oluthile lweproteni ukuze zisebenze kakuhle kwaye zihlale zomelele. Kumntu one-SMA, ngenxa yezizathu zemfuza, umzimba awuvelisi nto ingako kule proteni. Yiyo loo nto izihlunu zisiba buthathaka kancinci kancinci kwaye ziphele amandla.
Ngoko ke eli yeza leRisdiplam lenza umsebenzi omhle kakhulu . Linceda umzimba wethu wenze iproteni ekhethekileyo esweleyo. Kufana nomntu onceda umzi-mveliso ukuba usebenze kakuhle kwakhona xa icotha kancinci. Xa le proteni iveliswa kakhulu emzimbeni, inceda ekunciphiseni izinga lobuthathaka bemisipha nokulawula ukonakala kweempawu.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale amayeza
Kubaluleke kakhulu ukuthetha nogqirha wakho ngokucacileyo ngaphambi kokuba unike wena okanye umntwana wakho eli yeza. Ukuba kukho nayiphi na kwezi zilandelayo ezikukhathazayo, qiniseka ukuba uyayikhankanya.
| Oko kufuneka ukwazi | Kutheni oko kubalulekile? |
|---|---|
| Iimpendulo ze-allergy | Xelela ugqirha wakho ukuba une-allergy (i-allergy) kwi-Risdiplam okanye naliphi na elinye iyeza, ukutya, okanye idayi. |
| Ukukhulelwa okanye ukuzama ukukhulelwa | Eli yeza linokubangela iingxaki ezinkulu ekuzalweni komntwana xa lisetyenziswa ngexesha lokukhulelwa. Ngoko ke kubaluleke kakhulu ukuthetha ngalo mba.. |
| Ukuncancisa | Ukuba ungumama oncancisayo, yazisa ugqirha wakho. |
Ndingayisebenzisa njani kanye kanye le yeza?
Le yinto enoxanduva ukuyenza. Kodwa ungakhathazeki, uza kuqhela emva kwexesha elithile. Kungcono ukunika amayeza ngexesha elifanayo yonke imihla, njengoko ugqirha ekuyalele.
- Ukulungiselela: Hlamba izandla zakho kakuhle ngesepha ngaphambi kokulungisa iyeza nasemva kokulinika.
- Umlinganiselo ochanekileyo: Uza kufumana isirinji ekhethekileyo yomlomo enale yeza. Sebenzisa isirinji ukulinganisa ubungakanani obuchanekileyo ugqirha wakho akuxelele ukuba uthabathe. Musa ukusebenzisa naliphi na icephe okanye ikomityi ukulinganisa.
- Ukunikezelwa kwangoko: Emva kokutsalela iyeza kwisirinji, kufuneka linikwe isigulana kwimizuzu emi-5 . Musa ukulishiya ixesha elide ngaphezu koko.
- Ngaphambi okanye emva kokutya?: Oku kungenziwa kunye nokutya okanye ngaphandle kokutya. Ukuba kubonakala ngathi isisu sibuhlungu, kungcono ukukunika emva kokutya. Ukuba uncancisa, ungakwenza ngaphambi okanye emva kokuncancisa.
- Musa ukuxuba: Ungaze udibanise eli yeza nefomyula okanye naluphi na olunye uhlobo lobisi.
- Nika umntu amanzi: Emva kokumnika iyeza, mnike amanzi okusela. Oku kuya kusinceda siqinisekise ukuba yonke iyeza liginyiwe.
- Ukuba ingena eluswini okanye emehlweni: Ukuba ngempazamo ufumene iyeza eluswini lwakho, hlamba loo ndawo kakuhle ngesepha namanzi. Ukuba ingena emehlweni, hlambulula kakuhle ngamanzi kuphela.
Qhubeka usela eli yeza de ugqirha wakho akuxelele ukuba uyeke. Musa ukuyeka okanye ukutshintsha idosi ngokwakho.
Xa kunikwa abantwana abancinci
Eli yeza ngamanye amaxesha liyacetyiswa nakwiimveku ezisandul’ ukuzalwa. Nangona kunjalo, ngugqirha wakho kuphela onokugqiba ngale nto. Ngoko ke, kufuneka ulumke ngakumbi xa ulinika abantwana abancinci.
Yintoni omawuyenze ukuba uphoswe yidosi yeyeza?
Asisoloko sikhumbula yonke into. Ngoko ke kunokwenzeka ukuba ulibale ukunika idosi yeyeza. Ukuba oko kuyenzeka, ungakhathazeki.
Khawucinge ukuba bekufanele ukuba unike amayeza ngo-8 kusasa. Ulibele.
- Ukuba akukadluli iiyure ezi-6 emva kwexesha: Ukuba uyakhumbula ngaphambi kwentsimbi yesi-2 emva kwemini (oko kukuthi, zingadlulanga iiyure ezi-6 zexesha elicwangcisiweyo), thatha idosi oyiphosileyo ngokukhawuleza nje ukuba ukhumbule.
- Ukuba kudlule iiyure ezingaphezu kwezi-6 emva kwexesha: Ukuba uyakhumbula emva kwentsimbi yesi-2 emva kwemini, musa ukuya ngelo xesha.Yishiye ngokupheleleyo uze uyinike ixesha elizayo njengoko bekucwangcisiwe ngentsimbi yesi-8 kusasa ngosuku olulandelayo.
Eyona nto ibalulekileyo: Musa ukunika amayeza amabini ngaxeshanye okanye uwaphinde kabini kuba nje ulibele ukuwasela nangasiphi na isizathu. Ukuba umntwana uyahlanza emva kokusela amayeza okanye ucinga ukuba akaginywanga ngokupheleleyo, musa ukunika amayeza kwakhona ngaxeshanye. Nika amayeza alandelayo ngexesha elicwangcisiweyo ngosuku olulandelayo.
Ngaba kukho unxibelelwano phakathi kwezinye amayeza?
Ewe, amanye amayeza anokusebenzisana neRisdiplam. Elona liphambili elichongiweyo ukuza kuthi ga ngoku liyeza lesifo seswekile iMetformin .
Kodwa olu luhlu aluphelelanga. Ngoko ke xa usiya kugqirha wakho, mxelele ngayo yonke imithi oyithathayo wena okanye umntwana wakho. Oko kuthetha ukuba,
- Amayeza abhalwe ngoogqirha
- Amayeza angagunyaziswanga ngugqirha anokuthengwa kwikhemesti
- Iivithamini, izongezo zesondlo
- Amayeza esiSinhala, amayeza e-Ayurvedic
- Ukuba utshaya okanye usela utywala, baxelele nabo ngaloo nto.
Emva koko ugqirha wakho angalucwangcisa ngokukhuselekileyo unyango lwakho.
Izinto ezikhethekileyo ekufuneka uziqaphele xa usebenzisa amayeza
Ukukhulelwa kunye nolawulo lokuzalwa
Oku kubaluleke kakhulu . Kukho umngcipheko omkhulu wokuzalwa komntwana oneziphene ezinzulu ukuba ukhulelwa ngelixa usebenzisa eli yeza.
- Ngaphambi kokuba uqale amayeza, kufuneka wenze uvavanyo lokukhulelwa ukuqinisekisa ukuba awukhulelwanga.
- Kufuneka usebenzise uhlobo lokuthintela ukukhulelwa olusebenza kakuhle kakhulu ngalo lonke ixesha othatha ipilisi kwaye ubuncinane inyanga emva kokuba uyekile ukuyisebenzisa.
- Thetha ngokukhululekileyo nogqirha wakho malunga nendlela yokulawula inzala efanelekileyo kuwe.
Ukuchuma
Kukho inkxalabo yokuba eli yeza linokuba nefuthe ekuzaleni. Ukuba unenkxalabo yokuba nabantwana kwixesha elizayo, ungathandabuzi ukuthetha nogqirha wakho ngalo mba.
Zithini iziphumo ebezingalindelekanga ezinokubakho zeyeza?
Njengayo nayiphi na iyeza, eli yeza linokubangela ezinye iziphumo ebezingalindelekanga. Nangona kunjalo, ayinguye wonke umntu ozifumanayo. Itheyibhile engasezantsi ibonisa ngokucacileyo ukuba zeziphi ezi.
| Uhlobo lwesiphumo esibi | Iimpawu ezilindelekileyo |
|---|---|
| Izinto ekufuneka uzazise ugqirha wakho ngoko nangoko | |
| Iimpendulo Ezinzima Zokwaliwa Yi-Allergic | Ukurhawuzelela kwesikhumba, ukurhawuzelela okukhulu, ukudumba kobuso, imilebe, ulwimi okanye umqala (kunokubangela ubunzima bokuphefumla). |
| Ukuba iyaqhubeka okanye iyakhathaza, xelela ugqirha wakho. | |
| Iziphumo ebezingalindelekanga eziqhelekileyo |
|
Olu luhlu lusenokungabandakanyi zonke iziphumo ebezingalindelekanga. Ukuba ubona nantoni na engaqhelekanga ukongeza kwezi, xelela ugqirha wakho.
Ungayigcina njani iyeza?
Kubaluleke kakhulu ukugcina eli yeza ngokufanelekileyo.
- Eyona ndlela ilungileyo: Ukuyigcina efrijini kungcono. Kodwa ungaze uyibeke efrijini. Musa ukuyivumela ukuba iqine. Yigcine kwibhotile yokuqala eyayifike kuyo, kude nokukhanya.
- Ixesha lokugcina: Iyeza kufuneka lisetyenziswe zingadlulanga iintsuku ezingama-64 ukususela kumhla elixutywe kwaye likhutshwa yikhemesti. Emva koko, lahla naliphi na iyeza eliseleyo.
- Ubushushu begumbi: Kwimeko engxamisekileyo, njengaxa uhamba, ungayigcina kubushushu begumbi (ngaphantsi kwama-40 degrees Celsius) ukuya kuthi ga kwiintsuku ezi-5. Ezo ntsuku zi-5 akufuneki zilandelelane. Umzekelo, uyishiye ngaphandle usuku namhlanje, uyibuyisele efrijini, uyishiye ngaphandle olunye usuku emva kweveki... Emva kokuba iintsuku ezi-5 ziphelile, awunakuyishiya kwakhona.
- Gcina kude nabantwana: Njengakweminye imithi, gcina le kude nabantwana abancinci kunye nezilwanyana zasekhaya.
Ulahla njani amayeza aseleyo?
Musa nje ukuphosa amayeza aphelelwe lixesha okanye angafunekiyo enkunkuma okanye uwalahle endlwini yangasese. Cela ingcebiso kugqirha wakho.
Umyalezo Wokuya Ekhaya
- I-Risdiplam liyeza elikhethekileyo elisetyenziselwa ukulawula ubuthathaka bemisipha obubangelwa yi-Spinal Muscular Atrophy (SMA).
- Soloko usebenzisa isirinji ekhethekileyo eza neyeza kwaye unike ubungakanani obuchanekileyo obuchazwe ngugqirha.
- Ukuba uphoswe yidosi, yiyeke ukuba idlule iiyure ezi-6 emva kwexesha uze uthathe idosi yakho elandelayo ngexesha elicwangcisiweyo. Ungaze uyiphinde kabini idosi.
- Xelela ugqirha wakho ngazo zonke ezinye iziyobisi, iivithamini, kwanamayeza esiSinhala owasebenzisayo.
- Kuphephe ukukhulelwa ngelixa usebenzisa eli yeza kwaye emva kwenyanga enye uyekile. Kubalulekile ukusebenzisa uhlobo olufanelekileyo lokuthintela ukukhulelwa.
- Ukuba ukrokrela ukuba ngempazamo usele amayeza agqithisileyo, fowunela iZiko loLwazi lweePoisons kwiSibhedlele sikaZwelonke saseColombo ngoko nangoko, okanye uye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele esikufutshane.
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