Nu leh pa ka nih angin doctor-in i fate chu spinal muscular atrophy, a nih loh leh ‘Spinal Muscular Atrophy’ (SMA) tia kan hriat vek a nih thu a hrilh che hian i thinlung a ritzia ka hrethiam. Mahse, medical science hmasawnna avang hian tunah chuan chutiang dinhmun hmachhawn tur chuan enkawlna thar, beisei awm tak tak a lo chhuak ta a ni. Vawiin hian chutiang damdawi danglam tak, tunlai tak pakhat chungchang kan sawi dawn a ni. Chu chu damdawi Onasemnogene Abeparvovec an tih chu a ni.
A awlsam zawngin, he Onasemnogene Abeparvovec hi eng nge ni?
Hei hi hming hi a buaithlak deuh a, mahse a awlsam zawngin i sawi ang u. He damdawi hi `Zolgensma` tih brand name hmangin i hre tawh mai thei. Hei hi pill leh capsule pangngai a ni lo. Hei hi gene therapy a ni .
Ngaihtuah teh, kan taksaa hnathawh zawng zawng hi kan genes-in a thunun vek a ni. Computer program ang maiin. SMA-ah hian taksa ruh hnathawhna atana pawimawh protein siamtu gene-ah chhiatna a awm a. Chuvangin, he Onasemnogene Abeparvovec enkawlna hian a tih chu chu gene chhia chu naupang taksaah chuan gene hrisel tak copy a dah lut a ni. He gene hrisel hi harmlessly modified virus (adeno-associated virus) puihnain taksa nerve cell-ah a kal a ni.
A pawimawh ber chu hei hi SMA tidam kim thei tur enkawlna a ni lo. Mahse, natna a zual zel tur tihtawp nan a pui thei a, naupang taksa ruhte chu a thawk thei a, a chak zawk bawk.
Engtin nge he enkawlna hi pek a nih?
He damdawi hi damdawi inah pek a ni a, specialist doctor leh nursing staff te enkawlna kimchang hnuaiah pek a ni. Hei hi infusion hmanga enkawlna a ni. Saline solution ang bawkin he damdawi hi darkar khat vel chhungin taksaah zawi zawiin pek a ni. He enkawlna hi dam chhungin vawi khat chauh pek a ni tlangpui.
He enkawlna hi nausen piang thar leh naupang tê tê tan pawh pek theih a ni. Naupang enfiahtu specialist medical team chuan he enkawlna hi i fa tan a tha em tih an rel ang. Chuvangin ngaihtuah buai suh.
Enkawl hmaa doctor hnena i hrilh tur thilte
Hei hi enkawlna hmasawn tak a nih avangin enkawlna i tan hmain i fa hriselna dinhmun kimchang zawng zawng medical team-te hriattir hmasak a pawimawh hle . Heng thilte hi a bik takin hrilh ngei ang che.
- Naupangin thinlung natna a neih chuan.
- Tun hmaa liver natna emaw, liver enzyme inthlak danglamna emaw i lo report tawh chuan.
- Thisenah chuanThisen lama harsatna i neih chuan platelet count hniam ang chi i nei a nih chuan.
- He damdawi emaw damdawi dang emaw ei tur dang emaw allergy i neih tawh chuan.
- Nu naupai, nau pai tum emaw, nau hnute pek emaw a nih chuan.
He thu hi dik taka pek hi naupang himna atan a pawimawh hle.
Enkawlna avanga nghawng tha lo awm thei te chu engte nge ni?
Damdawi dang ang bawkin he enkawlna hian side effect engemaw zat a nei thei a ni. Ṭhenkhat chu thil pangngai tak ni mah se, fimkhur em em tur thil engemaw zat a awm. Chiang takin i then darh ang u.
| Side effect a awm thei | Description leh tih tur |
|---|---|
| Side effect na tak tak, doctor hnena hriattir nghal tur | |
| Liver Injury natna lan chhuah dan | Hei hi a pawimawh ber leh a tlangpuiin serious side effect a ni. Mit emaw vun emaw a sen (jaundice ang chi), zun dum/sen dum, bawlhhlawh dum, pum dinglam chunglam na, rilru hah, ei duh lohna, leh hah lutuk te ang chi natna lanchhuahna te chu fimkhur rawh. Heng zinga pakhat tal i hriat chuan doctor hnenah hrilh nghal rawh . |
| Allergic Reaction awm thei te | Vun vun rawng, hnim hring, hmai, hmui, lei hring emaw, thawk harsa emaw ang chi symptoms i neih chuan emergency a ni. Doctor hnenah hrilh nghal rawh. |
| Thisen chhuah emaw, hliam emaw danglam tak | Platelet a tlahniam avangin hliam tenau a\ang pawhin thisen a chhuak lo thei a, vun hnuaiah hliam a lo lang thei bawk. Hei hi i doctor hnenah pawh hrilh bawk ang che. |
| Hri kai theihna chhinchhiahna | Chhan awm lova khawsik, khawsik, ril na, khuh emaw i neih chuan doctor hnenah hrilh rawh. |
| Side effects a tlangpuiin a na lo hle a, mahse doctor hnenah hriattir tur a ni | |
| Luak chhuak | I fa chu enkawl hnuah a luak chhuak thei. Hei hi ni engemaw zat chhungin a reh tlangpui. Mahse, a awm reng chuan emaw, i fain harsatna a neih chuan doctor hnenah hrilh rawh. |
Overdose ka neih chuan engtin nge ni ang?
He damdawi hi damdawi inah doctor enkawlna hnuaia pek a nih avangin overdose theihna chance a tlem hle. Mahse, hetiang hi a thleng nia i rinhlelh chuan damdawi in Emergency Treatment Unit (ETU) hnenah hriattir nghal tur a ni. A tul chuan Colombo National Hospital-a National Poisons Information Center-ah pawh thurawn dil turin i call thei bawk.
Enkawl lai leh enkawl hnua ngaihtuah tur thil
Thisen test a ni
Enkawl hma leh enkawl zawhah i fa hian hun engemaw chen chu an liver function leh platelet level enfiah nan thisen test neih fo a ngai dawn a ni. Hei hi i fate himna atan a ni a, chuvangin heng test te hi i doctor-in a tih angin hun ruat saah dik taka tih a pawimawh hle.
Taksa tui leh bawlhhlawh enkawl dan
Hei hi mi tam takin an ngaihven loh thil pawimawh tak a ni. Enkawl zawhah he damdawi (modified virus) thenkhat hi thla khat emaw a aia rei emaw chhung naupang ek leh zun-ah a chhuak thei a ni. Chuvang chuan, naupang diaper thlak leh silfai dawnin chhungte fimkhur hle tur a ni.
- Diaper i thlak apiangin gloves vuah thin ang che.
- Diaper hman tawh chu plastic bag khar tha takah dah la, bawlhhlawh bawm hranah paih rawh.
- Diaper i thlak zawh chuan i kut chu sahbawn hmangin uluk takin silfai ang che.
- I fa thawmhnaw emaw, khum emaw ek emaw, zun emaw a bawlhhlawh chuan tui lum ah a hranin silfai thin ang che.
Hemi chungchangah hian lungngai suh. Damdawi in chhuahsan a, in lama i haw hmain medical team te chuan heng thil tih dan tur chiang takin an hrilh ang che.
Take-Home Thuchah a ni
- Onasemnogene Abeparvovec (Zolgensma) hi Spinal Muscular Atrophy (SMA) tan gene therapy bik a ni a, dam chhungin vawi khat thisenah pek thin a ni.
- Hei hian natna hi a tidam kim lo nachungin, natna kal zel dan tur thunun nan leh naupang nunphung tihchangtlunna kawngah nasa takin a pui a ni.
- Naupang hriselna chanchin kimchang (a bik takin thin, thinlung leh thisen kaihhnawih harsatna) te chu doctor hnenah hrilh hmasak a pawimawh hle.
- Enkawl zawhah thin (liver) chhiatna chhinchhiahna (vun/mit sen, zun dum) te chu fimkhur hle ang che. Chutiang chhinchhiahna i hmuh chuan doctor hnenah hriattir nghal rawh.
- Naute diaper leh bawlhhlawh enkawl hnu thla engemaw zat chhung kan khawih dawnin doctor thurawn zawm a pawimawh hle.
- He enkawlna chungchangah hian ngaihtuahna i neih chuan ngaihtuah ngai suh, mahse i fa enkawltu doctor emaw medical team emaw hnenah zawt rawh.
💬 Comments (0)
Comment a la awm lo. Hetah hian i comment hi a vawikhatna atan add rawh.
I comment kha add rawh