A châng chuan nu leh pa kan nih angin kan fate inthlâk danglamna tê tête hi kan ngaihtuah hle a ni lawm ni? I fate hian naupang dang angin a kawr chu a ding nghet lo va, a inher tha lo a, a thut loh chuan i tan chuan lungngaihna tlem i neih chu thil pangngai a ni tih han ngaihtuah teh. A châng chuan heng thilte hi Spinal Muscular Atrophy , a tawi zawngin SMA emaw a ni thei. Vawiin hian khawvel pumah he SMA natna damdawi atana hman thin Spinraza chungchang kan sawi dawn a ni.
A awlsam zawngin sawi ila, Spinal Muscular Atrophy (SMA) hi eng nge ni?
Spinal Muscular Atrophy (SMA) hi thlahtute atanga lo chhuak natna a ni . Chhuan khat atanga thlah dangah a kal zel theih tihna a ni. Hemiah hian thil thleng chu kan taksa ruh, chu chu ruhte chu a chak lo zauh zauh thin. He chak lohna hian naupang tan a kawr dik taka vawn te, mahni chauha thut te, kal te, a nasat ber thenkhatah chuan thil awlsam tak tak ei leh thawk te pawh a ti harsa thei a ni.
He natna hi chi hrang hrang a awm a, a lan chhuah tan tirh kum a zirin then a ni.
- Infantile-onset SMA: Nausen naupang tak (thla 6 hma) atanga natna lan chhuah dan.
- Juvenile/Later-onset SMA: Naupan lai (thla 6 hnuah) a lan chhuah chuan.
- Adult-onset SMA: Puitling hnua symptoms a lan chuan.
He natna chungchang sawi dawn chuan Spinraza hi he natna enkawlna atana pawimawh tak a ni. Tunah hian chipchiar takin sawi ila.
Engtin nge Spinraza (Nusinersen) enkawlna hi pek thin?
Spinraza hi regular shot angin pek a ni lo. Intrathecal injection angin pek a ni . A awlsam zawngin, i ruhro chhunga awm, i ruhro (spinal fluid)-ah direct-in a inject a ni. Hei hi a bik taka training nei doctor-te chauhin tih tur a ni. Chuvangin he enkawlna hi damdawi in pakhata special treatment centre-ah tih a ni tlangpui. Hetiang hian darkar engemaw zat a daih thei.
Enkawlna an tan tirh chuan dose pali, "loading doses" an tih chu hun hnai takah pek thin a ni.
1. Dose hmasa pathum hi ni 14 danah pek thin a ni.
2. Dose palina hi dose thumna atanga ni 30 hnuah pek thin a ni.
Chu dose pali hnuah chuan thla li danah dose khat pek chhunzawm zel a ni .
A chang chuan he damdawi hi i pek hmain i thisen leh zun test te pawh a awm thei.I doctor chuan dose tlemte a pe thei ang. Hei hi damdawi hian nghawng a nei em tih en nan a ni. Mahse, i doctor chauhvin eng chen nge enkawlna pek i nih dawn tih te, eng zat nge i pek dawn tih te, eng test nge i tih tur tih te chu a rel thei a ni.
A pawimawh ber chu i doctor-in a tih angin i enkawl dan tur leh i test tur ruahman chu i tlawh loh tur a ni.
He damdawi hian eng nge a rah chhuah?
Spinraza damdawi hman tangkai dan zirchian nan zirchianna lian tak pahnih neih a ni tawh a, pakhat chu naupang naupang tak tak (infantile-onset)-ah te, pakhat chu naupang kum upa lam deuh (later-onset)-ah te an ni.
Heng zirchiannaah hian naupang thenkhat chu damdawi Spinraza pek an ni. Group dang chu sham procedure pek an ni bawk . Chumi awmzia chu damdawi inject tak tak an ni lo va, needle te tak te hmanga hliam mai an ni tihna a ni. Hei hi damdawiin a nghawng dik tak tehna atana tih a ni.
A rah chhuah chu a fuh tak zet a ni.
- Naute naupangte zirchiannaah: Spinraza dawngtu naute zinga a chanve vel chuan movement milestone-ah hmasawnna nasa tak an nei a, placebo dawngtu naute zingah erawh chuan hmasawnna an nei lo.
- Naupang kum upa zawkte zirchiannaah: Thla 15 hnuah Spinraza dawngtu naupang 57% chuan taksa peng hrang hrang an thawk tha a, placebo dawngtu zinga 26% chauh an ni.
Hei hian he enkawlna hian SMA vei te nunah danglamna a thlen theih zia a tilang chiang hle. Mahse, hengte hi research result a ni tih hre reng ang che, i fate result pawh a danglam thei. Hemi hrethiam tur hian i doctor hi a tha ber a ni.
Spinraza side effects leh hlauhawmna nasa tak a awm thei
Damdawi dang ang bawkin Spinraza hian side effect a nei thei a ni. Chungte chu natna lan chhuah tan kum a zirin a danglam deuh hlek a ni.
| Symptoms lo awm tan hun | Side effect awm fo thin |
|---|---|
| Nausen atanga lo chhuak | Thlawhna kawng hnuai lam natna (e.g. lung infection) leh chaw ei kham. |
| A hnu lama lo awm tan | Khawsik, lu na, luak chhuak leh hnungzang na. |
Side effect tlangpui enkawl dan tur tips
- Lu na tan: Mut tha la, a hun takah ei la, tui in tam rawh.
- Constipation atan: Thei, thlai leh fiber tamna ei tur tam zawk ei la, tui tam tak in bawk ang che.
- Infection laka invenna: I kut sil fo la, i hmai khawih loh tur.
Hengte hi side effects awm fo mahse, a awm reng emaw, a nasat hmel hle emaw a nih chuan doctor hnenah hrilh ngei ang che.
Fimkhur hle rawh, risk lian tak tak!
Spinraza nena inzawm hlauhawm pahnih, a tlem hle, mahse pawi tak tak i hriat a ngai.
| Tum chhin | Symptoms fimkhur tur |
|---|---|
| Thisen chhuah theihna a awm (Thisen chhuah hlauhawmna - Platelets hniam) . |
|
| Kidney a chhiat phah (Kidney a chhiat) . |
|
A pawimawh hle mai:Nangmah emaw, i fa emaw hian a chunga kan sawi tak symptom na tak tak te hi i neih chuan i doctor hriattir nghal emaw, damdawi in hnai ber Emergency Department (ETU)-ah emaw kal rawh. Hei hi tihkhawtlai tur thil a ni lo.
Take-Home Thuchah a ni
- Spinal Muscular Atrophy (SMA) hi genetic natna a ni a, taksa ruh a tichak lo hle.
- Spinraza (Nusinersen) hi he natna enkawlna atana hman thin a ni a, taksa ruh hnathawh that nan a pui thin.
- He enkawlna hi specialist doctor-in a pe a, chu chu spinal fluid-ah injection hmangin a pe thin.
- Side effect tlanglawn tak tak, lu na leh khawsik te pawh a awm thei. Mahse, thisen chhuah tam lutuk emaw, kal chhia emaw ang chi symptom na tak tak a awm chuan fimkhur fo ang che.
- I doctor thupek ang chiah kha zawm rawh. Enkawlna leh test neihna tur appointment ruat sate chu tlawh loh tur a ni.
- Enkawlna chungchanga zawhna i neih apiang, a nghawng tha lo leh a senso te chu i enkawltu specialist nen zalen takin sawiho rawh.
💬 Comments (0)
Comment a la awm lo. Hetah hian i comment hi a vawikhatna atan add rawh.
I comment kha add rawh