Ngamanye amaxesha njengabazali, sixhalabile kakhulu ngotshintsho oluncinci oluyenzeka ebantwaneni bethu, akunjalo? Khawuthelekelele ukuba umntwana wakho omncinci akayibambi intamo yakhe iqonde njengabanye abantwana, akaqengqeleki kakuhle, okanye akahlali phantsi, kuyinto eqhelekileyo ukuba uzive ukhathazekile kancinci. Ngamanye amaxesha unobangela wezi zinto unokuba yi -Spinal Muscular Atrophy , okanye i-SMA ngamafutshane. Namhlanje sithetha ngeSpinraza, iyeza elisetyenziswa kwihlabathi liphela njengonyango lwesi sifo se-SMA.
Ngamafutshane, yintoni i-Spinal Muscular Atrophy (SMA)?
I-Spinal Muscular Atrophy (SMA) sisifo semfuza . Oku kuthetha ukuba sinokudluliselwa kwizizukulwana ngezizukulwana. Okwenzekayo koku kukuba izihlunu zomzimba wethu, oko kukuthi, izihlunu, ziyathamba kancinci kancinci. Olu buthathaka lunokwenza kube nzima kumntwana ukugcina intamo yakhe ithe tye, ahlale yedwa, ahambe, kwaye kwezinye iimeko ezinzima, kwanezinto ezilula ezifana nokuginya nokuphefumla.
Kukho iintlobo ezahlukeneyo zesi sifo, zahlulwe ngokweminyaka apho iimpawu ziqala ukubonakala khona.
- I-SMA yokuqalisa kosana: Xa iimpawu zibonakala kumntwana omncinci kakhulu (ngaphambi kweenyanga ezi-6).
- I-SMA yobuntwana/emva kwexesha: Ukuba iimpawu zibonakala ebuntwaneni (emva kweenyanga ezi-6).
- I-SMA yokuqalisa komntu omdala: Ukuba iimpawu ziyavela emva kokuba umntu emdala.
Xa kufikwa kwesi sifo, iSpinraza lunyango olubaluleke kakhulu kwesi sifo. Masithethe ngayo ngokweenkcukacha ngoku.
Inikwa njani unyango lweSpinraza (Nusinersen)?
I-Spinraza ayinikwa njengenaliti eqhelekileyo. Inikwa njengenaliti yangaphakathi . Ngamafutshane, ifakwa ngqo kulwelo lomqolo, olungaphakathi komqolo wakho. Oku kufanele kwenziwe kuphela ngoogqirha abaqeqeshwe ngokukodwa. Ke ngoko, olu nyango ludla ngokwenziwa kwiziko lonyango elikhethekileyo esibhedlele. Le nkqubo ingathatha iiyure ezininzi.
Xa unyango luqala, iidosi ezine, ezibizwa ngokuba yi- "loading doses," zinikwa ngexesha elifutshane.
1. Iidosi ezintathu zokuqala zinikwa rhoqo emva kweentsuku ezili-14.
2. Idosi yesine inikwa emva kweentsuku ezingama-30 emva kwedosi yesithathu.
Emva kwezo dosi zine, unyango luyaqhubeka ngedosi enye rhoqo kwiinyanga ezine .
Ngamanye amaxesha uvavanyo lwakho lwegazi nomchamo lunokwenziwa ngaphambi kokuba unikwe eli yeza.Ugqirha wakho angakunika iidosi ezimbalwa. Oku kukujonga ukuba iyeza liyasebenza na. Nangona kunjalo, ngugqirha wakho kuphela onokugqiba ukuba uza kunikwa unyango kangaphi, idosi ingakanani, kunye novavanyo ekufuneka ulwenze.
Eyona nto ibalulekileyo kukuba ungaze uphoswe lunyango olucwangcisiweyo kunye novavanyo njengoko luchazwe ngugqirha wakho.
Zithini iziphumo zale mithi?
Kuye kwenziwa izifundo ezibini ezinkulu ukuphanda ukusebenza kakuhle kwesiyobisi iSpinraza: esinye kubantwana abancinci kakhulu (ukuqala kosana), kunye nesinye kubantwana abadala kancinci (ukuqala kamva).
Kwezi zifundo , abanye abantwana banikwa iyeza iSpinraza. Elinye iqela lanikwa inkqubo yobuxoki . Oku kuthetha ukuba abazange bafakwe iyeza, kodwa bahlatywa nje ngenaliti encinci. Oku kwenzelwa ukulinganisa isiphumo sokwenyani sesiyobisi.
Iziphumo ziyakhuthaza ngokwenene.
- Kwisifundo seentsana ezincinci: Phantse isiqingatha seentsana ezafumana iSpinraza zibonakalise ukuphucuka okukhulu kwimigangatho yokuhamba, ngelixa kungekho namnye kwiintsana ezafumana i-placebo obonakalise ukuphucuka.
- Kwisifundo sabantwana abadala: Emva kweenyanga ezili-15, ama-57% abantwana abafumene iSpinraza babenemisebenzi ephucukileyo yezihlunu, xa kuthelekiswa nama-26% kuphela abo bafumene i-placebo.
Oku kubonisa ukuba olu nyango lunokwenza umahluko ongakanani kubomi bezigulane ze-SMA. Kodwa khumbula, ezi ziziphumo zophando, kwaye iziphumo zomntwana wakho zinokwahluka. Ugqirha wakho ngumntu ongcono onokukuqonda oku.
Iziphumo ebezingalindelekanga zeSpinraza kunye neengozi ezinkulu
Njengayo nayiphi na imithi, iSpinraza inokubangela iziphumo ebezingalindelekanga. Ezi ziyahluka kancinci ngokuxhomekeke kwiminyaka apho iimpawu ziqala khona.
| Ixesha lokuqala kweempawu | Iziphumo ebezingalindelekanga eziqhelekileyo |
|---|---|
| Ukuqala kosana | Usulelo olusezantsi lwemiphunga (umz. usulelo lwemiphunga) kunye nokuqhina. |
| Ukuqala kamva | Umkhuhlane, intloko ebuhlungu, ukuhlanza kunye nomqolo obuhlungu. |
Iingcebiso zokulawula iziphumo ebezingalindelekanga eziqhelekileyo
- Ngeentloko ezibuhlungu: Lala kakuhle, yitya ngexesha elifanelekileyo, kwaye usele amanzi amaninzi.
- Ukuqunjelwa: Yitya iziqhamo, imifuno, nokutya okutyebileyo kwi-fiber, kwaye usele amanzi amaninzi.
- Thintela usulelo: Hlamba izandla zakho rhoqo kwaye uphephe ukuchukumisa ubuso bakho.
Nangona ezi ziziphumo ebezingalindelekanga eziqhelekileyo, ukuba ziyaqhubeka okanye zibonakala zinzima, qiniseka ukuba uxelele ugqirha wakho.
Lumka kakhulu, iingozi ezinkulu!
Ufanele uqaphele iingozi ezimbini ezingaqhelekanga, kodwa ezinzulu kakhulu, ezinxulumene neSpinraza.
| Umngcipheko | Iimpawu ekufuneka uziqaphele |
|---|---|
| Ingozi yokopha (Umngcipheko Wokopha - Iiplatelets Eziphantsi) |
|
| Umonakalo wezintso (Umonakalo wezintso) |
|
Ibaluleke kakhulu:Ukuba wena okanye umntwana wakho nifumana naziphi na iimpawu ezinzulu ezikhankanyiweyo apha ngasentla, yazisa ugqirha wakho ngoko nangoko okanye uye kwiSebe lezeMpilo eziNgxamisekileyo (ETU) lesibhedlele esikufutshane. Asikuko ukulibazisa oku.
Umyalezo Wokuya Ekhaya
- I-Spinal Muscular Atrophy (SMA) sisifo semfuza esenza izihlunu zibe buthathaka.
- I-Spinraza (Nusinersen) lunyango olusetyenziselwa esi sifo olunceda ukuphucula ukusebenza kwezihlunu.
- Olu nyango lunikwa ngugqirha ochwephesha, ngokufaka inaliti kulwelo lomqolo.
- Iziphumo ebezingalindelekanga eziqhelekileyo ezifana nentloko ebuhlungu kunye nomkhuhlane zinokubakho. Nangona kunjalo, soloko uqaphela iimpawu ezinzulu ezifana nokopha kakhulu okanye umonakalo wezintso.
- Landela imiyalelo kagqirha wakho ngokuchanekileyo. Ungaphoswa ziintlanganiso ezicwangcisiweyo zonyango kunye novavanyo.
- Xoxa ngayo nayiphi na imibuzo onayo malunga nonyango, iziphumo zalo, kunye neendleko ngokukhululekileyo nengcali yakho yonyango.
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