Xa umntwana wakho okanye ilungu losapho lixelelwa ngugqirha ukuba linesifo esibizwa ngokuba yi-Spinal Muscular Atrophy (SMA), ukuba besinzima kwaye soyikeka kangakanani... Sisifundo esibucayi kakhulu. Kodwa ungakhathazeki. Namhlanje, isayensi yezonyango ihambele phambili kakhulu. Kukho unyango olutsha olunokunceda ukulwa nezi meko kwaye lwenze ubomi bube lula. Olunye unyango olukhethekileyo noluphambili yiNusinersen. Usenokuba ukhe weva ngalo phantsi kwegama leSpinraza. Ngoko ke, namhlanje, masithethe ngokulula nangendlela enobubele ngale mithi, indlela enikwa ngayo, kunye noko kufuneka ukwazi.
Kalula nje, yintoni iNusinersen?
I-Nusinersen liyeza elikhethekileyo elenzelwe ngokukodwa unyango lwe-Spinal Muscular Atrophy (SMA). I-SMA sisifo semfuza. Kule meko, iiseli zemithambo-luvo (ii-motor neurons) ezilawula izihlunu zethu ziyathamba kancinci kancinci. Emva koko izihlunu ziyeka ukusebenza kakuhle.
Kulapho ke iNusinersen ingena khona. Eli yeza linceda imizimba yethu ivelise iproteni ebalulekileyo ebizwa ngokuba yi-SMN (Survival of Motor Neuron). Le proteni igcina iiseli zemithambo-luvo ezilawula izihlunu ziphilile.
Into ebalulekileyo kukuba iNusinersen ayilonyango lwe-SMA. Nangona kunjalo, inokunceda ukulawula ukuqhubela phambili kwesi sifo nokuphucula amandla emisipha ukuya kuthi ga kwinqanaba elithile . Oku kunokuphucula kakhulu umgangatho wobomi besigulana.
Izinto ekufuneka uzixelele ugqirha wakho ngaphambi kokuba uqale unyango
Ngaphambi kokuba uqalise unyango lweNusinersen, kubalulekile ukunika ugqirha wakho inkcazo epheleleyo ngemeko yakho okanye yomntwana wakho. Qiniseka ukuba ubazisa oku kulandelayo ngokukodwa:
| Imeko yempilo okanye ithuba | Kutheni kubalulekile kugqirha? |
|---|---|
| Isifo sezintso | Ekubeni izintso zibandakanyeka kwinkqubo yokususa iNusinersen emzimbeni, ugqirha kufuneka alumke ngakumbi ukuba kukho ubuthathaka kwizintso. |
| Iingxaki zokugalela igazi, ezifana neeplatelets ezisezantsi | Eli yeza ngamanye amaxesha linokuchaphazela ukubalwa kweeplatelet egazini, ngoko ke ukuba usemngciphekweni wokopha, ugqirha wakho kufuneka azi oku kwangaphambili. |
| Ukuba ukhulelwe okanye uzama ukukhulelwa | Kusekho idatha encinci malunga nemiphumo yale mithi ngexesha lokukhulelwa, ngoko ke kufuneka uxoxe ngemingcipheko kunye neenzuzo nogqirha wakho ngaphambi kokuba wenze isigqibo. |
| Ukuba umntwana uncanciswa | Ekubeni kungacaci ukuba iyeza lidluliselwa ebantwaneni ngobisi lwebele, kubaluleke kakhulu ukuxoxa ngale nto nogqirha wakho. |
Eli yeza linikwa njani emzimbeni?
Olu asilonyango lwasekhaya. I-Nusinersen sisitofu esinikwa yingcali esibhedlele okanye ekliniki.
Oku akufani nohlaselo oluqhele ukulwelwa engalweni okanye empundu. Lufakwa kulwelo olujikeleze umqolo, kwikholamu yomqolo. Ngokuchanekileyo, oku kubizwa ngokuba yi- intrathecal injection . Le nkqubo yenziwa liqela loogqirha abaqeqeshiweyo nabanamava.
Olu nyango lunokunikwa izigulane ze-SMA zalo naluphi na ubudala, ukusuka kwiintsana ezisandul’ ukuzalwa ukuya kubantu abadala. Nangona kunjalo, isigqibo senziwa ngugqirha wakho emva kokuhlola ngononophelo imeko yesigulana.
Wenza ntoni ukuba uphoswe yintlanganiso yonyango?
Olu nyango lunikwa ngokweshedyuli ethile. Kungoko ke , kubaluleke kakhulu ukuya esibhedlele ngomhla omiselweyo ukuze ufumane unyango. Ukuba ngenxa yesizathu esithile esingxamisekileyo awukwazi ukuya ngomhla omiselweyo, fowunela ugqirha wakho okanye isibhedlele ngoko nangoko uze ubazise. Baza kukucebisa ngento omawuyenze.
Ngaba kukho naziphi na iziphumo ebezingalindelekanga?
Njengakweminye imithi, ezinye iziphumo ebezingalindelekanga zinokubakho ngexesha lonyango ngeNusinersen. Ezinye zezi zincinci, ngelixa ezinye zifuna ingqalelo ekhethekileyo.
| Uhlobo lwesiphumo esibi | Iimpawu |
|---|---|
| Izinto onokuzixela ngoko nangoko kugqirha wakho okanye kwiYunithi yoNyango oluNgxamisekileyo (ETU) yesibhedlele | |
| Iimpawu zokopha |
|
| Iingxaki zezintso | Ubunzima bokuchama okanye utshintsho kubungakanani bomchamo owudlulayo. |
| Izinto ezingaqhelekanga ukuba zimbi, kodwa kufuneka zixelwe kugqirha ukuba ziyaqhubeka | |
| Iziphumo ebezingalindelekanga eziqhelekileyo |
|
Ukuba ufumana naziphi na iimpawu ezingaqhelekanga ezingadweliswanga apha, thetha nogqirha wakho ngazo. Ukuba ukrokrela ukuba kukho ityhefu kwiziyobisi, ungatsalela umnxeba kwiZiko loLwazi lweTyhefu leSizwe kwiSibhedlele sikaZwelonke saseColombo .
Ingaba iyasebenzisana namanye amayeza?
Akukho ngxelo zezinye iziyobisi ezibangela ukusebenzisana okukhulu neNusinersen. Nangona kunjalo, ukuze ukhuseleke, xelela ugqirha wakho ngazo zonke izinto ozisebenzisayo.
- Amayeza ezinye izifo
- Amayeza angagunyaziswanga ngugqirha
- Iivithamini, imifuno, okanye izongezo zokutya
- Kwakhona, yazisa ugqirha malunga nokutshaya nokusebenzisa utywala.
Ugqirha wakho uza kujonga imeko yakho rhoqo kulo lonke unyango lwakho. Kuya kufuneka ukuba wenze umsebenzi wegazi rhoqo ukuze ujonge ukusebenza kwezintso zakho kunye nobungakanani beeplatelet. Kubaluleke kakhulu ukuba ungaluphosi olu vavanyo.
Umyalezo Wokuya Ekhaya
- I-Nusinersen lunyango oluthile olunceda ukulawula nokulawula iimpawu ze-Spinal Muscular Atrophy (SMA). Ayinyangi ngokupheleleyo isifo.
- Eli yeza linikwa esibhedlele ngugqirha okhethekileyo ngokufaka inaliti kulwelo olujikeleze umqolo.
- Ngaphambi kokuba uqale unyango, xelela ugqirha ngazo zonke iimeko zempilo onazo wena okanye umntwana wakho (ingakumbi iingxaki zezintso kunye nokugabha kwegazi) kunye nawo onke amayeza owasebenzisayo.
- Funa uncedo lwezonyango ngokukhawuleza ukuba ubona iziphumo ebezingalindelekanga ezinzulu, ezinje ngeempawu zokopha okanye iingxaki zokuchama.
- Kubaluleke kakhulu ukufumana unyango ngexesha kwaye ugqirha anike uvavanyo lwegazi.
- Ukuba unemibuzo engaphezulu malunga nolu nyango, nceda ungathandabuzi ukubuza ugqirha wakho.
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