Elivaldogene Autotemcel (SKYSONA) - Thluak natna hlauhawm tak enkawl dan bik i zir ang u

Vawiin hian mi tam takin an la hriat ngai loh damdawi lam enkawlna, a buaithlak deuh, mahse tunlai tak tak chungchang kan sawi dawn a ni. A hming chu Elivaldogene Autotemcel a ni. SKYSONA tih hming puin an hralh chhuak a ni. Hei hi pill leh capsule pangngai a ni lo. Hei hi thluak lam natna hlauhawm tak leh na tak, cerebral adrenoleukodystrophy (CALD) tih enkawlna bik a ni. He enkawl dan hi i hriatthiam theih tur awlsam takin i sawifiah ang u.

He damdawi hi eng nge thleng tak tak?

Hei hi hrethiam tur chuan entirnan tlem han la ila. Kan thluak leh ruhro (spinal cord)-a nerve cell te hi electric wire ang mai an ni tih han ngaihtuah teh. Heng electrical wire te hian an chhehvelah plastic sheath (insulation) an nei a, hei hian electric chu leak awm lovin a kal tluang thei a ni. Chutiang bawkin kan nerve cell-te pawh hian an chhehvelah ‘myelin’ an tih, venhimna (protective sheath) an nei bawk. He sheath hi nerve message te chu rang tak leh dik taka kal theihna tura siamtu a ni.

Natna pakhat cerebral adrenoleukodystrophy (CALD) an tih ah chuan genetic defect vangin taksain he ‘myelin’ sheath hi vawng reng tura protein mamawh a siam chhuak thei lo. Chumi hnuah chuan he protective sheath hi a chhe zauh zauh a, nervous system hnathawh a tichhe ta a ni.

A awlsam zawngin sawi ila, he enkawlna, Elivaldogene Autotemcel tia koh hian damlo taksa atanga cell lakchhuah a, lab-a genetically modify a, protein bo siam chhuah theihna pek a ni. Chumi hnuah chuan modified cells te chu damlo taksaah an lut leh thin. Hei hi gene therapy an ti bawk . Hei hian symptoms na zual zel chu control turin a pui thin.

He enkawlna i tan hmaa i doctor-in a hriat tur thilte

Hei hi enkawlna buaithlak tak a nih avangin i medical team te hian i hriselna dinhmun hi an hriat chian a pawimawh hle. Enkawlna i tan hmain heng natna te hi i neih chuan i doctor hnenah i hrilh ngei ang:

• Tunah hian natna chi hrang hrang (khawsik, khawsik, khuh ang chi) i neih chuan.
• He damdawi (elivaldogene autotemcel), damdawi dang, ei tur, dye, emaw, preservatives emaw allergy i neih chuan.
• Naupai emaw naupai tum emaw i nih chuan .
• I naute hnute i pek chuan .

Engtin nge a enkawl dan chu pek a nih?

Hei hi home remedy a ni lo. He enkawlna hi damdawi in emaw, specialized clinic emaw-ah trained medical team-in an pe thin.

I enkawl hmain MedGuide tih hming pu special information leaflet pek i ni ang. He damdawi chungchang, a kalphung leh a hlauhawmna chungchangah hian thu pawimawh tak tak a awm a. Uluk taka chhiar leh hriatthiam a pawimawh hle.

He enkawlna hi naupang kum 4 chunglam tan pawh pek thin a ni a, mahse fimkhurna leh tehfung bik ngaihtuah a ni.

Damdawi i ei tam lutuk chuan engtin nge ni ang?

Hei hi damdawi inah doctor enkawlna hnuaia pek a nih avangin hetiang thil thleng theihna hi a tlem hle. Mahse, hetiang thil thleng nia rinhlelhna a awm chuan Colombo National Hospital-a National Poisons Information Center emaw, damdawi ina Emergency Treatment Unit (ETU) emaw hnenah hriattir nghal tur a ni.

Enkawl lai leh enkawl hnua ngaihtuah tur thil

Hetiang enkawlna i dawn hnu hian doctor-te chuan i hriselna an enfiah reng ang. Chumi atan chuan thil thenkhat chu a bik takin i enkawl a ngai dawn a ni.

• Thisen hnathawh: Inenkawl zawhah i thisen chu hun bituk mumal taka enfiah a ngai dawn a ni. Hei hian enkawlna a thawk tha em tih te, cell thar te hian hna a thawk tha em tih te, side effects a awm em tih te a enfiah ang.
• Hri kai theihna: He enkawlna hian hun engemaw chen i taksa hriselna a tichak lo thei a, chu chuan natna kai theihna a tipung thei a ni. Khawsik, khawsik, khuh, emaw, rilru na ang chi symptoms i neih chuan mahni invenna nei suh. I healthcare team te chu call nghal rawh . Tin, damlote lakah a theih ang anga inthiarfihlim tum bawk ang che.
• Thisen pek: Hetiang enkawlna i dawn hnuah thisen i pe thei lo .
• Cancer hlauhawmna: Tunlai gene therapies hetiang ang hian thisen cancer chi hrang hrang vei theihna a tlem hle. Hei hian hlau suh la, mahse he hlauhawmna chungchang leh i doctor nen engtin nge an enkawl ang tih hi inhawng takin sawi rawh.
• Mipa tana thurawn bik: Hetiang enkawlna dawng mek mipa i nih chuan nau neih theihna nei hmeichhia nena inpawlnaah condom i hmang tur a ni . Hetiang invenna dan hi enkawl hnu thla 6 chhung zawm tur a ni. Hetih hun chhung hian i kawppui naupai nia i rinhlelh chuan doctor hnenah hriattir nghal tur a ni.

Side effect awm thei te chu engte nge ni?

Damdawi dang ang bawkin he enkawlna hian side effect a nei thei a ni. Ṭhenkhat chu damdawi lam pan vat a ngai a, ṭhenkhat erawh chu mi pangngai an ni thei.

He list-ah hian side effect awm thei zawng zawng a tel lo. Chu bâkah, natna lan chhuah dân danglam tak i neih chuan i doctor hnênah sawipui rawh.