I fa hian PKU (Phenylketonuria) a nei em? Sapropterin powder chungchang hi han sawi ila!

A chang chuan kan fate leh keimahni ngei pawh hian hriselna lama harsatna bik engemaw zat nen kan khawsa a ngai thin, a dik em? Chutiang dinhmun pakhat chu Phenylketonuria (a tawi zawngin PKU tia hriat bawk) an ti a. Hetiang natna damdawi pek zinga pakhat chu Sapropterin a ni. Chuvangin vawiinah hian he damdawi Sapropterin an tih hi kan thianpa nena inbiakna ang maiin i zir dawn a ni.

He damdawi hi eng nge ni? (Sapropterin hi eng nge ni?)

A awlsam zawngin sawi ila, Sapropterin hi Phenylketonuria, a nih loh leh PKU tih natna vei te taksaa chemical phenylalanine an tih tam lutuk control thei damdawi a ni. Kan eitur a protein chi hrang hrang te te hi amino acid an ti tih i hre reng em? Phenylalanine hi chutiang amino acid pakhat a ni. PKU vei chuan he phenylalanine hi uluk takin a tichhia thei lo va, chu chu a digest a, a tul angin a hmang thei lo. Tichuan thisenah a pung khawm a, hun kal zelah thluak leh nervous system a tichhe thei a ni.

He Sapropterin damdawi hian taksa chhunga phenylalanine awm chu a ti chhe thei a ni. Tichuan, thisena a khawlkhawmna chu a tlahniam ta a ni. Vawi tam tak chu he damdawi nen hian doctor-te chuan ei leh in bik leh a chang chuan exercise lak an rawt thin. A chhan chu, hetiang dinhmunah hian phenylalanine awmna ei tur hi a theih ang anga tihtlem a ngai a ni.

Doctor-te chuan he damdawi hi natna dang atan pawh an pe thei a, chuvangin zawhna i neih chuan i doctor emaw pharmacist emaw zawh a tha ber .

He damdawi hi damdawi dawr atangin JAVYGTOR emaw KUVAN emaw brand hmingin i lei thei tlangpui.

He damdawi hi i ei hmaa doctor hnena hrilh tur thil

Sapropterin i ei tan hmain heng thilte hi i doctor hnenah i hrilh ngei ang. A chhan chu chutih hunah chauh chuan he damdawi hi i tan a tha em tih leh engzat nge pek tur che tih an hre thei ang. He thu hi thup hian harsatna chauh a thlen ang.

• Ei leh in lama harsatna i nei em ? Chu chu anorexia (rilru ei loh avanga taksa rihna tihtlem) leh bulimia (ei tam lutuk leh a hnua luak chhuak) ang chi dinhmun a ni.
• Khawsik i nei em ?
• Infection i nei em ?
• Kal natna i nei em ?
• Liver natnaa awm em?
• Fit ( seizures ) nei ang maia inhriatna tur condition i nei em ? A nih loh leh i lo nei tawh em?
• Sapropterin, damdawi dang, ei tur, ei tur rawng, a nih loh leh preservatives allergy i nei tawh em?
• Naupai emaw, naupai tum emaw i nih chuan (hei hi a pawimawh hle).
• Nu hnute pe lai i nih chuan .

Heng thilte hi thup lova doctor hnena hrilh hi i hriselna atan a pawimawh hle a ni lawm ni?

He damdawi hi engtin nge i hman?

Awle, tunah chuan he damdawi hi engtin nge a hman dan dik tak hi han en ila. Hei hi oral medication a ni. Chaw ei rualin ei tur a ni. I doctor-in a pek che prescription label-a thupekte chu i zawm tur a ni. I doctor-in a hrilh che aia tam emaw a tlem emaw ei ngai suh.

Hei hi powder angin a lo thleng a ni. Tui emaw apple tui emawa hmin hmangin i in tur a ni. I doctor emaw pharmacist emaw hnenah tui emaw apple tui emaw i ei tur zat dik tak zawt rawh. Powder chu a hmin vat tur a ni a, a hmin vek tur a ni. Damdawi hi a hmin atanga minute 30 chhungin i in tur a ni. Chu aia rei chu dah suh.

Thil dang pakhat chu, he powder hi tlem tal chu applesauce (applesauce ang chi) emaw pudding-ah emaw i pawlh thei bawk. Chumi chungchang pawh i doctor zawt la, i tan a nuam a nih chuan.

I damdawi chu a hun takah ei la, a theih chuan nitin hun khatah ei thin ang che. I doctor-in a tih aia tam ei suh. Tin, doctor thurawn tel lo chuan i damdawi ei kha bansan lo la. Chutianga i tih chuan i dinhmun chu a tizual thei a ni.

He damdawi hi naupang te te hnena pek dan tur

Thil bik thenkhatah chuan he damdawi hi nausen thla khat mi lek tan pawh pek theih a ni. Mahse, fimkhurna bik a awm. Chu chu, fimkhur hle tur thil a awm tihna a ni. Chuvangin, i doctor nen hemi chungchang hi sawipui la, a thupek dik tak zawm rawh. Damdawi ei zat tur chu naupang rih zawng a zirin a ruat a ni.

A pawimawh ber: He damdawi hi i tan chauh a ni. Midang hnenah pe suh, nangmah ang bawka symptom nei pawh nise. Mi tin dinhmun hi a inang lo vek a, chuvangin he damdawi hi doctor rawn hmasa lovin tu hnenah pawh pek hi a tha lo.

Damdawi ei tur appointment i neih loh chuan engtin nge i tih?

Khawngaihin, chutiang hunah chuan hlauthawng suh. Dose i miss a nih chuan i hriatreng veleh ei nghal rawh. Mahse, i dose leh tur hun a lo thleng tawh a nih chuan (i.e. darkar tlemte chhungin) dose hloh chu skip la, a hun ruatah dose dang ei leh rawh. Double dose ei ngai suh.Ni khatah a zat tur ruahman chauh i ei tur a ni. Hemi chungchangah hian rinhlelhna i neih chuan i doctor emaw pharmacist emaw zawt la.

I ei tam lutuk chuan engtin nge i tih ang? (Overdose) a ni.

Damdawi i ei tam lutuk nia i hriat chuan, emaw, i fain a ei palh a nih chuan damdawi in hnai ber emergency room-ah kal nghal rawh. A nih loh leh poison control center ah call rawh. Hei hi emergency anga ngaih tur a ni , tihkhawtlai suh.

He damdawi nena inzawm thei damdawi dang (Interactions) .

Damdawi thenkhat chu Sapropterin nena ei hian a thawk tha lo thei a, harsatna dang a thlen thei bawk. Heng inzawmnate hi kan ti a ni. Chuvangin i damdawi ei tur eng pawh doctor hnenah hrilh thin ang che.

• Avanafil `( Avanafil )` tih a ni
• Levodopa (Parkinson natna damdawi) .
• Methotrexate (cancer leh arthritis ang chi natna atana hman) .
• Pemetrexed a ni
• Pyrimethamine (malaria enkawlna atana hman thin damdawi) .
• Sildenafil `(Sildenafil)` tih a ni
• Tadalafil `(Tadalafil)` tih a ni
• Vardenafil a ni

He list-ah hian damdawi zawng zawng a tel vek lo thei. Chuvangin, i damdawi ei zawng zawng (vitamin, herbal remedies, leh dietary supplement te pawh tel) 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 i damdawi nen a inzawm thei.

Damdawi ei huna fimkhur tur thil

He damdawi i ei lai hian i doctor chuan i dinhmun chu uluk takin a lo enfiah ang. Doctor hmu fo la, thisen test pawh tih fo bawk ang che. Heng thisen test te hian i phenylalanine level a enfiah a, damdawi hian hna a thawk tha em tih a enfiah thin. He damdawi hi i taksain a chhanlet theih nan kar 4 vel a ngai thei tih hre reng ang che. Chuvangin hlauthawng suh, dawhthei mai rawh.

I natna lan chhuah dan a ṭhat loh chuan, a zual deuh chuan doctor hnenah hrilh nghal rawh.

A pawimawh ber chu he damdawi ei lai hian ei leh in bik i zawm a ngai a ni. Phenylalanine tlakchhamna ei tur i ei a ngai a ni. Hei hi PKU tan chuan a pawimawh hle. I ei leh in lama inthlak danglamna i siam hmain i doctor emaw, dietitian/nutritionist emaw nen inbiakna neih hmasak phawt ang che. I tana tha tur ei tur list an pe thei che a, i chaw siam dan tur thurawn an pe thei bawk.

Ngaihtuah teh, Nalini Akka hian a fanu PKU vei hnenah he damdawi hi a pek lai hian doctor-in a hrilh angin a ei leh in a thunun a ni. Chaw a buatsaih hmain phenylalanine tlakchhamna ei tur a zawng fo thin. Store a kal chuan ei tur packet-a label awmte chu a chhiar thin. Hetiang dinhmunah hian chutiang enkawlna chu a ngai a ni.

A side effects te chu engte nge ni?

Damdawi dang ang bawkin Sapropterin hian mi thenkhatah side effect a nei thei a ni. Mahse, mi zawng zawngin an hmu vek lo. Eng nge an nih i han thlir teh ang.

Side effects i doctor hnena i hrilh nghal tur:

Heng symptoms zinga pakhat tal i neih chuan doctor hnenah i hrilh nghal vat tur a ni. Chûngte chu thil pawi tak a ni thei.

• Allergic reactions: Vun vun rawng, vun rawng, vun sen, hmai, hmui, lei emaw kawr emaw a hring (hei hian thawk a ti harsa thei bawk).
• Hyperactivity: Restlessness, fidgeting, thusawi tam lutuk, leh ngaihven harsa.
• Inflammation of the esophagus or stomach: Ei duh loh, ril na, na leh ei harsa, rilru a kang, luak, luak, khuh vawt, thisen chhuak emaw tarry stools.

Side effects, a tlangpuiin doctor thurawn ngai lo, mahse a awm reng chuan doctor hnenah hriattir tur:

Hengte hi ni rei lo te chhungin a reh tlangpui. Mahse an nghet tlat a nih chuan, emaw, an tibuai che a nih chuan i doctor hnenah hrilh rawh.

• Khuh
• Kawthalo
• Lu na
• Hnar luang emaw, hnar khar emaw
• Hrawk thip
• Luak chhuak

He list-ah hian side effect zawng zawng a tel lo mai thei. Thil dang danglam tak i hmuh chuan i doctor hnenah zawt la.

Engtin nge damdawi chu i dahkhawm thin?

He damdawi hi uluk taka dahkhawm a pawimawh hle bawk.

• Naupang leh ran vulhte hmuh theih lohna hmunah dah tur a ni.
• Room temperature (20 leh 25 degree Celsius inkar, 68 leh 77 degree Fahrenheit inkar) ah dah tur a ni. Khua lum leh vawt nasa takah dah suh.
• He damdawi hi a luhna original container-ah dah la.
• Bottle chu khar nghet takin dah la, chu chuan tui a chhuah loh nan.
• Damdawi expired hmang lo la, uluk takin paih mai tur a ni. I damdawi dawrah a paih dan tur dik tak i zawt thei bawk.

A tawp berah chuan thil hriat reng tur

Awle, Sapropterin chungchang hi kan sawi tam tawh a ni lawm ni? PKU tih hming pu natna nena nun chu thil harsa tak a ni thei a, mahse hetiang damdawi leh damdawi lam thurawn dik tak hmang hian nang leh i fa chuan chu harsatna chu in hneh thei ang.

" He damdawi hi doctor-in a pek ang chiah, a pek zat leh a pek hun taka ei hi a pawimawh hle tih hre reng ang che. Tin, ei leh in bik zawm a pawimawh hle bawk."Heng thil pahnih hi uluk taka i tih chuan i PKU dinhmun hi i control tha thei ang a, nun hrisel tak i hmang thei ang."

Zawhna, ngaihtuahna, rinhlelhna i neih chuan i rilruah dah suh la, i doctor hnenah zalen takin zawt rawh. I tanpui turin an awm reng a ni. He zin kawngah hian nangmah chauh i ni lo, i bulah kan awm vek!

Nang leh i naute hriselna tha neih duhsakna ka hlan e!

` Sapropterin, Sapropterin, PKU, Phenylketonuria, Phenylketonuria, Phenylalanine, Phenylalanine, damdawi, naupang hriselna, genetic natna