Chibai! Vawiin hian ruihhlo pakhat, tlem a danglam deuh, mahse mi thenkhat tan chuan an nun atan a pawimawh em em mai kan sawi dawn a ni. Chu chu Sapropterin a ni. Nangmah emaw, i hriat emaw, i fa ngei pawhin natna hlauhawm tak `Phenylketonuria` tih, a tawi zawnga `(PKU)` tia hriat bawk i neih chuan he damdawi hi i hre tawh ngei ang. Chuvangin, he damdawi hi eng nge a nih tak tak te, kan taksa a tanpui dan te, a hman hunah eng thil nge a bik takin kan fimkhur tur tih te i lo en ang u.
A hmasain, Phenylketonuria (PKU) hi eng nge ni?
A awlsam zawngin sawi ila, `Phenylketonuria` hi genetic condition, rochun atanga lo chhuak a ni. Hetiang natna vei hian amino acid `Phenylalanine` an tih chu uluk takin a ti chhe thei lo va, a process thei lo bawk. I ngaihtuah mai thei, `Phenylalanine` chu eng nge ni? Kan ei thin protein tam takah a awm a, entirnan, bawnghnute, sa, sangha, artui, leh nut.
Chuvangin, `PKU` vei miah chuan he `phenylalanine` (Phenylalanine) hi taksaah a pungkhawm tan thin. Bawlhhlawh tlem a lo awm khawm ang mai a ni. He accumulation hi a tha lo hle a, a bik takin thluak tan chuan a tha lo hle. Hei hi naupan lai atanga control a nih loh chuan thluak thanlenna a tikhawlo thei a, rilru lama hmasawnna lama harsatna, nungchang inthlak danglamna, leh epilepsy thlengin a awm thei bawk. Chuvangin `PKU` vei te hian `phenylalanine` (Phenylalanine) tlem zawk ei leh in bik an zawm a ngai a ni.
Chuti a nih chuan engtin nge Sapropterin hian he thil hi a puih?
Hetah hian damdawi `Sapropterin` (Sapropterin)` a lo lut a, `PKU` damdawi a ni lo a, mahse `PKU` vei thenkhat (a zawng zawng ni lo) taksaa `Phenylalanine` (Phenylalanine) level tihhniam nan a pui a ni. Chu chu, he damdawi hian taksain `Phenylalanine` (Phenylalanine)` (Phenylalanine) chu tlemin a ti chhe thei zawk tihna a ni. Mahse chu special diet nen chuan hman dun tur a ni. He damdawi hi i tan emaw, i fa emaw tan a tha em tih te, engzat nge pek tur tih te chu doctor in a rel ang.
He damdawi hi brand hming ``JAVYGTOR`` emaw ``KUVAN`` emaw hmangin a awm thei.
He damdawi hi ka ei tan hmaa doctor hnena ka hrilh tur te chu engte nge ni?
Nangmah emaw, he damdawi eitu emaw hian a hnuaia thil awmte hi i neih chuan damdawi i ei tan hmain i doctor hnenah i hrilh hmasa phawt tur a ni. Hengte hi thup loh a tha ber, a chhan chu mahni hriselna a nghawng thei a ni.
- Ei leh in lama harsatna danglam tak i nei em? Entirnan, anorexia emaw bulimia emaw.
- Khawsik i nei em? A nih loh leh natna chi khat i nei em?
- Kal natna i nei em?
- Liver natna i nei em?
- Seizures, epilepsy ang chi i nei tawh em?
- Sapropterin, damdawi dang, ei tur, dye, a nih loh leh preservatives te hi i allergy em?
- Naupai i ni em? A nih loh leh naupai i beisei em?
- Nu hnute pe thin i ni em?
Heng zawng zawng hi doctor nen zalen taka sawiho a pawimawh hle.
Okay, chuti a nih chuan engtin nge he damdawi hi ka hman ang?
Hei pawh hi i hriat chian a ngai a ni. Doctor-in a sawi ang chiah kha i zawm a ngai a ni.
- Heng pills te hi chaw ei rualin ei tur a ni .
- I doctor-in damdawi a pek che kha, a damdawi ziah label-a a ziah ang chiah khan, a zat tur angin, a hun ruat angin ei rawh.
- Tablet hi tui nen a pumin ei theih a ni a, a nih loh leh tui ounces 4 atanga 8 (milliliter 120 atanga 240 vel) emaw apple tui emaw-ah a hmin thei bawk.
- A pawimawh ber: A hmin atanga minute 15 chhungin i in tur a ni. Chu aia rei chu dah bo suh.
- Tablet te hi a hmin vat duh chuan i chil chhak thei a, a hmin laiin spoon hmangin i hrual tha thei bawk.
- A châng chuan, pill-te chu a hmin vek lovin tuiah chuan a tê tête a lo inhnim pil tih i hmu thei bawk. Hei hi thil pangngai a ni. Damdawi ei zawh hnua glass chhunga thil te te a la awm chuan tui emaw apple tui emaw tlem tal dah belh la, hrual la, chu pawh chu in rawh. Chutiang chuan damdawi dose kimchang chu i hmu ang.
- Thil dang chu tablet te chu hrual a, ei tur tlemte, applesauce emaw pudding emaw nen chawhpawlh a ni.
- Nitin hun khata, nitin hun khata i damdawi ei hi a pawimawh hle. I doctor-in a tih aia tam ei suh , a nih loh leh i damdawi chu zawt lovin ei kha bansan rawh.
Naupang tê tête hnêna pêk a nih chuan a bîk hle:
He damdawi hi i fa te hnenah i pe dawn a nih chuan i pediatrician hnenah i sawipui ngei tur a ni. He damdawi hi nausen thla khat mi lek te chu thil bik thenkhatah pek theih ni mahse, fimkhur tur thil engemaw zat a awm. Chuvangin Doctor-in a sawi ang chiah chu zawm rawh.
Damdawi i ei tam lutuk chuan engtin nge i tih ang?
Chutiang a nih chuan, chu chu i ngaihtuah aia tam damdawi i ei tawh nia i hriat chuan, i hnai ber poison control center emaw, damdawi in emergency room emaw chu call nghal rawh. Hun khawhral suh.
Hriat tur pawimawh: He damdawi hi nangmah tan chauh a ni. I damdawi chu midang hnenah pe suh, nangmah ang bawka natna lanchhuahna nei pawh nise.
Damdawi dose khat ka ei loh chuan engtin nge ni ang?
Chutiang a nih chuan i hriatreng veleh missed dose kha ei nghal rawh. Mahse, i dose leh tur hun a lo thleng tawh a nih chuan missed dose kha skip la, i dose leh tur chu a hun ruatah ei rawh. Vawi khatah vawi hnih ei ngai suh.
He damdawi nena inzawm thei damdawi dang a awm em?
Ni e, a awm mai thei. Sapropterin nena inzawm thei damdawi engemaw zat a awm. Entir nan:
- Avanafil `(avanafil)` tih a ni
- Levodopa `(levodopa)` tih a ni
- Methotrexate hmanga siam a ni
- Pemetrexed a ni
- Pyrimethamine a ni
- Sildenafil `(sildenafil)` tih a ni
- Tadalafil `(tadalafil)` tih a ni
- Vardenafil `(vardenafil)` tih a ni
He list hi a kim lo. Chuvangin, i damdawi ei zawng zawng (prescribed emaw over-the-counter emaw), herbs, vitamins, leh dietary supplement i hman zawng zawngte chu i doctor hnenah hrilh rawh. Tin, zu i in emaw, zu i in emaw, ruihhlo i hman emaw chuan i doctor hnenah hrilh bawk ang che. Thil thenkhat chu he damdawi nen hian a inzawm thei a ni.
He damdawi hi ka ei dawnin eng nge ka fimkhur bik ang?
Hei pawh hi a pawimawh hle.
- I doctor chuan i dinhmun a enfiah reng ang. Chuvangin, ni ruat saah clinic-a kal a, i thisen test tihsak chu hloh suh . A bik takin phenylalanine level i enfiah fo tur a ni.
- He damdawi hian taksaah nghawng a neih theih nan kar 4 vel a la ngai thei. Chuvangin lungngai suh.
- I natna lan chhuah dan a tha lo a nih chuan, emaw, a na zual ang tih a hriat chuan doctor hnenah hrilh rawh.
- Pawimawh tak: He damdawi i ei lai hian ei leh in bik i zawm a ngai dawn a ni. Hei hian phenylalanine tlemna ei tur ei tihna a ni. I doctor emaw nutritionist emaw chuan chipchiar takin a hrilhfiah ang che. Doctor thurawn tel lo chuan i ei leh in hi thlak ngai suh.
He damdawi hian eng side effect nge a neih theih?
Damdawi zawng zawng ang bawkin he damdawi hian side effect tenau te a nei thei bawk. Ṭhenkhat chu an serious a, ṭhenkhat erawh chu chutiang chuan an serious lo.
Heng thilte hi a lo thleng a nih chuan Doctor hnenah i hrilh nghal a ngai!
- Allergic reaction a nih chuan: Vun natna, vun hring, hives, hmai, hmui leh lei hring tihna a ni.
- I ek chu a dum emaw, thisen emaw a nih chuan, emaw, thisen i chhuah chuan.
- Thâwk harsa.
- I luak chhuak, i lu a hah, i tlu dawn ang maia i hriat chuan.
- Symptoms te chu fidgeting, restlessness, thusawi tam lutuk, leh tlan kual vel (hyperactivity) te hi a ni. (Hei hi naupang tê tê tan chuan a dik hle)
- Pum natna nasa tak i neih chuan.
Hengte hi a hlauhawm lo tlangpui a, mahse a awm reng chuan doctor hnenah hrilh rawh :
- Khuh
- Thluak hring (diarrhea) .
- Lu na
- Nausea, luak chhuak
- Hrawk thip
- Hnar luang, hnar khar
He list-ah hian side effect zawng zawng a tel lo. Thil danglam bik i hriat chuan doctor zawt rawh. Side effects te chu FDA (Food and Drug Administration) hnenah 1-800-FDA-1088 ah i report thei bawk.
Engtin nge i damdawi i dahkhawm ang?
- Naupangte hmuh theih lohna hmunah dah rawh . Hei hi a pawimawh hle.
- Room temperature (20 leh 25 degree Celsius / 68 leh 77 degree Fahrenheit inkar) ah dah tur a ni.
- Damdawi chu a luhna original container-ah dah la, bottle chu khar nghet takin khar rawh.
- Damdawi expired hman loh tur. Anni chu paih bo rawh.
A tawp berah chuan hriat nawn tirna tlem
Hei hi damdawi `Sapropterin` chungchanga kan sawi tawhte khaikhawmna mai a ni. He damdawi chungchanga zawhna dang i neih chuan i doctor, pharmacist, emaw healthcare provider dang emaw zawt la. Engmah hlau suh la, i rilruah dah reng bawk ang che.
Thil pawimawh hriat reng tur (Take-Home Message) .
Okay, chuti a nih chuan, kan sawi tawh atang khan i ngaihtuah reng tur point te kha kan hriat nawn tir leh ang che em?
- Sapropterin hi damdawi a ni a, phenylketonuria (PKU) vei thenkhatah phenylalanine level control nan a pui a ni.
- Hei hi damdawi a ni lo va , special diet nen chauh hman tur a ni .
- Damdawi ei hmain doctor hnenah i hriselna dinhmun zawng zawng leh damdawi i ei zawng zawngte hrilh hmasa phawt ang che.
- Damdawi i dilute a nih chuan minute 15 chhungin in tur a ni.
- Test dik tak a hun takah tih a pawimawh hle.
- Side effect danglam tak i neih chuan doctor hnenah hrilh nghal rawh.
- Doctor thurawn lo chuan i ei leh in thlak danglam suh.
Nangmah emaw, i fa emaw hian he damdawi hi i lo pe tawh a nih chuan doctor-in a hrilh ang chiah chein zawm rawh. Chumi hnuah chauh chuan he damdawi hi i hlawkpui thei ang a, i `PKU` dinhmun chu i control tha thei ang a, nun hrisel tak i hmang thei ang. Ka duhsakna ka hlan a che u!
` Sapropterin, Phenylketonuria, Phenylketonuria, PKU, Phenylalanine, Phenylalanine, Damdawi, Damdawi, Side Effects te











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