I chhungkuaah, a bik takin naupang tê tê, ruhro ruhte chu zawi zawiin a chak lo deuh tih i hre tawh em? Damdawi lamah chuan hei hi Spinal Muscular Atrophy (SMA) kan ti a ni. Sinhala tawngah chuan ruhro nena inzawm taksa ruh (muscles) tihchhiatna a ni. Hei hi genetic disease a ni a, thlah khat atanga thlah dangah a kai darh zel a ni. Hei vang hian he taksa chak lohna hian nitin kan tih thin hna, kan lu ding nghet taka vawn te, tanpuina tel lova thut te, kal te, chaw ei te, thawk chhuah te pawh a nghawng thei a ni. Chuvangin, he SMA natna enkawlna atana ei tur damdawi thar pek chu Evrysdi (risdiplam) tih a ni. Vawiin hian he damdawi hi kan sawi dawn a, a hman dan tur te, a thatna te, a side effects i hriat tur te kan sawi dawn a ni.
SMA natna leh a chi hrang hrang chungchang tawi te te
Evrysdi damdawi chungchang kan sawi hmain SMA chungchang tlem han hrethiam ila. He natna hi a lan chhuah tan kum a zirin chi hrang hrangah then a ni.
- Infantile-onset SMA (Type 1): Hei hi a na ber chi a ni. Nausen lai, thla 6 an tlin hmain symptoms hi a lang tlangpui.
- Later-onset SMA (Type 2 leh 3): Hetiang chiah hian naupan lai emaw, tleirawl lai emaw atanga a lan chhuah tan thin.
- Adult-onset SMA (Type 4): Hetiang a nih chuan puitlin hnuah chauh symptoms a lang thin.
Heng damdawi chi hrang hrang enkawl nan hian damdawi Evrysdi hi hman a ni. Genetic test hmanga SMA vei nia hriat, symptomatic la nei lo (pre-symptomatic) te tan pawh pek thin a ni.
Evrysdi damdawi hman dan tur?
Hei hi a pawimawh hle a, a chhan chu damdawi dik taka hman hian result a nghawng nghal vek a ni .
He damdawi hi specialty pharmacy atangin i dawng ang a, liquid form-ah i dawng ang. Powder ang chi thil awmna bottle i dawng ngai a nih chuan, chu chu pawlh la, in suh. Chutiang a nih chuan damdawi pekna hmun emaw, i doctor emaw chu biak nghal rawh.
Damdawi buatsaih dan tur
I doctor chuan engzat nge i ei tur tih leh a teh dan tur leh i buatsaih dan tur chiang takin a hrilh ang che. Damdawi bottle hi cap, bottle adapter, leh hman nawn theih syringe engemaw zat nen a lo thleng tur a ni. Heng thilte hi a bo emaw, a chhe emaw a nih chuan damdawi i ei hmain doctor nen inbiakna neih hmasa phawt ang che.
- Nitin damdawi hi a ruala ei a pawimawh .
- Damdawi ei hun tha ber chu chaw ei kham a ni . Nausen a nih chuan, .I hnute i pek zawh hnuah pe rawh .
- He damdawi hi formula emaw, bawnghnute chi dang emaw, bawnghnute nen chawhpawlh ngai suh.
- Damdawi ei zawhah tui tlem in la, a ei kim vek tawh tih chian nan.
- Mi thenkhat chu he damdawi hi feeding tube hmangin an pe thin. Chutiang a nih chuan damdawi i pek hnuah tube chu tuiin i silfai a ngai mai thei.
A pawimawh ber: Dose tehna atana special syringe pek i kha hmang la. A bo emaw, a chhe emaw a nih chuan a thar i lak hmain doctor zawt hmasa phawt ang che. Syringe hman tawh chu silfai theih a ni a, silfai theih a ni a, a tuk zingah hman theih a ni bawk.
Damdawi ei huna fimkhur tur thil
Syringe chhunga damdawi dose i draw up hnuah minute 5 chhungin i in tur a ni . Chumi chhunga i in theih loh chuan a dose chu paih la, dose thar buatsaih rawh.
Tin, he damdawi hi i vunah emaw, i mitah emaw lut suh. I vunah a lo lut a nih chuan sahbawn leh tui hmangin uluk takin silfai thin ang che. I mitah a lut a nih chuan tui thianghlim hmangin i mit chu uluk takin silfai ang che. Damdawi bottle hnih chu dose khat atan eng chhan pawha chawhpawlh suh.
He damdawi hlawhtlinna hi engtin nge an test?
Damdawi eng pawh market-a a lo chhuah hma hian clinical study tam tak neih a ni a, engtiang chiahin nge a hlawkzia leh a him tih hriat a ni. Evrysdi damdawi pawh hetiang test hi eng emaw zat a lo nei tawh bawk. A awlsam zawngin han thlir ila.
| Test chi hrang hrang | Test-a telte | Results ber hmuhchhuah a ni |
|---|---|---|
| Nausen atanga lo chhuak SMA | Nausen 58, thla 6 vel, Type 1 SMA nei an ni. | Thla 12 chhung damdawi an ei hnuah hmun thuma ṭhena hmun khat vel chu ṭanpuina awm lovin second 5 chhung an thu thei ta a ni. Thla 24 hnuah chuan 60% vel chu chutiang chuan an thu thei ta a ni. |
| A hnu lama lo chhuak SMA | Naupang leh puitling kum 2-25 inkar 180 type 2 emaw 3 SMA nei. (Ṭhenkhat chu Evrysdi pek an ni a, ṭhenkhat chu placebo pek an ni bawk.) | Evrysdi ei thinte motor function a tha zawk a, placebo ei thinte erawh a tlahniam thung. |
| Symptoms la lang lo te (Pre-symptomatic) . | Naute kar 6 hnuai lam 26 te chu genetic test hmanga SMA vei nia hriat an ni a, mahse asymptomatic an ni. | Thla 12 tawp lamah chuan 96% chu tanpuina awm lovin second 5 chhung an thu thei ta a ni. 81% chu second 30 chhung an thu thei a ni. |
Hengte hi zirchianna result a ni tih hre reng ang che. Nangmah emaw, i fain emaw result i hmuh tur chu a danglam thei. Mi tin taksa dinhmun a zirin a inang lo.
Evrysdi hian eng side effect nge a neih?
Damdawi dang ang bawkin Evrysdi hian side effect tenau tak tak a nei thei a ni. A tlangpui ber chu:
- Khawsik
- Kawthalo
- Vun vun rawng emaw, itching emaw
Hengte hi a side effect tam ber a ni a, mahse side effect dang awm thei pawh a awm bawk.
Side effect a awm chuan engtin nge tih tur?
Khawsik ang chi ah chuan doctor nen inbiakna neiin paracetamol dose dik tak i dawng thei bawk.
I pum a lo chhuak a nih chuan a pawimawh ber chu dehydration ven hi a ni.
- Tui tam tak in tur pe rawh.
- Nausen a nih chuan hnute pe fo thin ang che.
- Naupang te te chu Jeevani (oral rehydrating solution) ang chi in tur pek hi a tha hle.
- Tui tam tak in thin ang che.
A pawimawh ber chu i natna lanchhuahna tibuaitu emaw, thil danglam tak anga lang emaw i neih chuan i doctor hnenah hriattir nghal tur a ni. Mahni invenna mai mai suh.
Naupai leh naupai lai hian Evrysdi hi a him em?
Hei hi thil pawimawh tak a ni.
- Naupai i nih chuan, naupai tum i nih chuan, nau i hnute i pe a nih chuan Evrysdi i tan hmain doctor hnenah hrilh hmasa phawt ang che.
- Tuna kan ngaihdan chuan Evrysdi damdawi hian nausen pum chhunga awm tan a tichhe thei a ni.
- Chuvangin he damdawi hi i tan hmain naupai test i neih hmasak phawt a ngai a, i rai lo tih hriat chian a ngai a ni.
- Pill i ei lai leh pill i ei zawh hnu thla khat tal chu naupai venna hmanraw tangkai tak i hmang tur a ni.
Hemi chungchanga zawhna emaw, ngaihtuahna emaw i neih chuan i doctor nen sawiho rawh.
Take-Home Thuchah a ni
- Spinal Muscular Atrophy (SMA) hi genetic natna a ni a, taksa ruh chak lohna a thlen thin. He natna tan hian Evrysdi hi oral liquid damdawi a ni.
- Damdawi hi i doctor-in a hrilh ang chiah khan i ei tur a ni a, nitin hun khatah i ei tur a ni a, chaw ei zawhah a tha ber.
- Dairy hi bawnghnute atanga siam nen chawhpawlh suh. Damdawi ei zawhah tui tlem in tur a ni.
- Side effects, khawsik, pum na, vun natna te a awm thei. I doctor hnenah symptoms buaithlak tak tak i neih chuan hrilh rawh.
- Naupai i nih chuan, naupai tum i nih chuan, nau i hnute i pe a nih chuan, he damdawi hi i ei dan tur hi i doctor nen sawiho ngei ang che.
- Zawhna emaw, ngaihtuahna emaw i neih apiang chu i doctor nen zalen takin sawipui rawh. Chu chu thu dik tak hriat theihna hmun tha ber a ni.
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