I fa hian ei tur a hmu tawk lo em ni? Prader-Willi Syndrome chungchang hi han sawi ila!

I fate hian eng ang pawhin ei mah se, "Ka pu lo, a tam zawk ka duh?" Chaw a ngaihtuah reng a, ei tur a zawng reng a, a chang chuan tumah an awm loh laiin ei tur a rukbo thin tih i hmu ngai em? Hei hi a hmutu nu emaw pa emaw tan harsatna lian tak leh lungngaihna thlentu a ni thei. A tam zawkah chuan hei hi naupang chaw ei duhna niin kan ngai. Mahse chutiang chu a ni reng reng lo. Hetiang riltam lutuk chhan hi thlahtute atanga lo chhuak , Prader-Willi Syndrome tih hi a ni thei. Vawiin hian he thu hi, a kaihhnawih riltam lutuk (`hyperphagia`), leh a enkawl dan awlsam leh friendly takin kan sawi dawn a ni.

Prader-Willi Syndrome hi eng nge ni?

A awlsam zawngin Prader-Willi Syndrome hi kan DNA inthlak danglamna avanga lo awm, genetic condition awm lo tak a ni. A chang chuan, lu hliam na tak vang pawh a ni thei.

Hetiang dinhmun hian kan thluak peng pakhat hypothalamus a nghawng ber a ni. Hypothalamus hi kan taksaa switch angin han ngaihtuah teh. Kan ei a, kan chaw ei hian he part hian "Okay, enough is enough" tih signal min thawn thin. Mahse Prader-Willi Syndrome vei thluak ah chuan he "switch" hian hna a thawk tha lo. Chuvang chuan eng ang chaw ei pawh ni se, an chaw ei kham lo.

Hetianga riltam reng reng (`hyperphagia`) avang hian ei tur an zawng reng a ni.

• Mi pangngai aiin ei tur tam zawk an ei thin.
• Nakin lawka ei tur ei tur an thup thin.
• Thil thleng nasa tak ṭhenkhatah chuan, chaw hmin (frozen food) ei tûra thlêmna i nei thei a, bawlhhlawh bawm aṭanga ei tûr pawh a ni mai thei.

Hetiang dinhmun hi control a nih loh chuan thau lutuk leh a kaihhnawih hriselna lama harsatna dang (zunthlum leh thinlung natna ang chi) neih theihna a sang hle.

He riltam lutuk hi enkawlna tur a awm em?

Awle. He riltam lutuk hi thunun thei damdawi a awm. Vykat XR (diazoxide choline) hi chutiang damdawi pakhat a ni. He damdawi hian kan thluaka riltam leh ei duhna thununtu hormone leh neurotransmitter te a nghawng a, chu riltamna awm reng chu a ti tlem a ni.

Mahse hei hi damdawi duhthusam anga ei theih a ni lo. He enkawlna hi specialist enkawlna hnuaiah chauh tan tur a ni.

He damdawi hi engtin nge i hman?

Hei hi ni khatah vawi khat ei thin pill a ni tlangpui. Chaw ei rual leh ei loh pawhin ei theih a ni. Mahse , tablet chu a pumin a ei tur a ni a, a chhe lo va, a tikehsawm lo va, a ei loh tur a ni.

I doctor chuan he damdawi hi a dose tlem hlein a tan tir ang che. Tichuan, kar hnih danah zawi zawiin an dose an tipung ang. Hei hi `titration' an ti a. Hei hi i tana tha tur leh i symptoms control tha ber tur maintenance dose zawn nan tih a ni. Kar khat emaw a aia rei emaw chhung damdawi i ei theih loh chuan i doctor chuan a dose hniam zawkin a tan leh thei che a, zawi zawiin a tipung thei bawk.

Engtin nge damdawi hian hna a thawk em tih i hriat theih ang?

He damdawi hian hna a thawh tan chuan nangmah emaw, i fa emaw chuan ei duhna reng reng, ei duhna, leh riltam lutuk ang chi thilte chu zawi zawiin a tlahniam tih i hmu ang. He damdawi hian a taka a thawh theih nan hun engemaw chen a mamawh avangin kar hmasa lamah hian inthlak danglamna lian tak a awm beisei suh.

Mahse, damdawi ei chung pawha i ei duhna a la ṭha lo a nih chuan i doctor nen inbiakna neihpui ngei ang che. Damdawi chu a chawlhsan thei a, a tul chuan enkawlna dang a rawt thei bawk.

Side effects awm tam ber chu engte nge ni a, eng nge tih theih ang?

Damdawi dang ang bawkin side effect a nei thei bawk. Mahse, mi zawng zawngin an hmu vek lo. Side effect awm tam ber leh enkawl dan tur i lo en ang u.

Condition na tak tak, enkawl bik ngai!

He damdawi hian thisen sugar level a tisang thei tih min hrilh tawh bawk. A tlem berah chuan hei hian natna hlauhawm tak Diabetic Ketoacidosis (DKA) tih a thlen thei a ni. Hei hi taksain insulin a neih tlem avangin thisenah thil tha lo, ketones an tihte a lo punkhawm hian a ni. Hei hi medical emergency a ni.

Sugar level sang lutuk chhinchhiahna:

• Thil danglam tak a tuihal tih hriatna
• Zun chhuah fo thin
• A hma aia riltam zawka inhria
• Tum loh vanga taksa rihna tihtlem

Diabetic Ketoacidosis (DKA) vei vaukhânna chhinchhiahna:

• Nausea emaw, luak chhuak emaw
• Pum a na
• Chauhna nasa tak emaw, buaina emaw
• Thâwk harsa
• Thâwk chungah rah rim a nam
• Thisen sugar level sang tak nei (e.g., 300 mg/dL aia tam) .

Damdawi dang nena inzawmna (interaction) hriat reng tur.

Damdawi dang i ei hian Vykat XR hnathawh dan a nghawng thei a ni. Damdawi thenkhat chuan Vykat XR side effects a tipung thei a, thenkhat erawh chuan a thatna a ti tlem thei thung.

Chuvangin, i fain damdawi i ei zawng zawng (prescription medicines, over-the-counter medicines, vitamins, traditional medicines, herbal products te pawh) i doctor hnenah chiang takin hrilh rawh. A dose a siamrem ang a, a tul chuan damdawi a thlak ang. Damdawi engmah hi doctor zawt hmasa lovin tan leh titawp suh.