Sɔntɛnde, wi pikin dɛn ɛn wisɛf kin gɛt fɔ liv wit sɔm spɛshal wɛlbɔdi prɔblɛm dɛn, nɔto so? wan pan dεn kayn kכndyushכn dεm ya dεn kכl am Phenylketonuria (dεn kin kכl am bak PKU fכ sכt). Wan pan di mɛrɛsin dɛm wae dɛn kin gi fɔ dis sik na Sapropterin. So tide, lɛ wi lan bɔt dis mɛrɛsin we dɛn kɔl Sapropterin, jɔs lɛk we wi de tɔk to wi padi.
Wetin na dis mɛrɛsin? (Wetin na Sapropterin?)
Fɔ tɔk am simpul wan, Sapropterin na mɛrɛsin we de ɛp fɔ kɔntrol di bɔku bɔku kemikal we dɛn kɔl phenylalanine we de gɛda pasmak na pipul dɛn we gɛt wan sik we dɛn kɔl Phenylketonuria, ɔ PKU. Mɛmba se di smɔl smɔl prɔtin we de insay di it we wi de it, dɛn kɔl am amino asid? Fɛnilalanin na wan pan dɛn kayn amino asid dɛn de. Pɔsin we gɛt PKU nɔ kin ebul fɔ brok dis phenylalanine fayn fayn wan, dat na fɔ dayjɛst am ɛn yuz am as nid de. Dɔn i kin gɛda na di blɔd ɛn i kin pwɛl di bren ɛn di nervɔs sistɛm as tɛm de go.
Dis Sapropterin mεdisin de εp fכ brok dכn da fεnylalanin de na di bכdi. Dɔn, di we aw i kin gɛda na di blɔd kin stɔp. Bɔku tɛm, wit dis mɛrɛsin, dɔktɔ dɛn kin advays fɔ it spɛshal it ɛn sɔntɛnde fɔ ɛksesaiz. Bikɔs, insay dis sityueshɔn, yu nid fɔ ridyus di it we gɛt phenylalanine as yu ebul.
Dɔktɔ dɛn kin gi yu dis mɛrɛsin bak fɔ ɔda sik dɛn, so if yu gɛt ɛni kwɛstyɔn, i go fayn fɔ aks yu dɔktɔ ɔ fama .
Yu kin bay dis mɛrɛsin na famasi dɛm ɔnda di brand nem dɛm JAVYGTOR ɔ KUVAN.
Tin dɛm fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Bifo yu bigin fɔ tek Sapropterin, yu fɔ rili tɛl yu dɔktɔ bɔt dɛn tin ya. Bikɔs na da tɛm de nɔmɔ dɛn go ebul fɔ no if dis mɛrɛsin fayn fɔ yu ɛn ɔmɔs fɔ gi yu. If yu ayd dis infɔmeshɔn, dat go jɔs mek yu gɛt prɔblɛm.
- Yu gɛt ɛni prɔblɛm wit yu it ? Dat min se, tin dɛn lɛk anorexia (na maynd we de mek pɔsin nɔ gɛt bɔku bɔku bɔdi we i nɔ de it) ɛn bulimia (wan tin we kin mek pɔsin it pasmak ɛn afta dat i kin vɔmit).
- Yu gɛt fiva ?
- Yu gɛt ɛni infɛkshɔn ?
- Yu gɛt sik na yu kidni ?
- Liva sikna de?
- Yu gɛt wan sik we de mek yu fil lɛk se yu gɛt fit ( seizures ) ? Ɔ yu dɔn gɛt wan bifo?
- Yu dɔn ɛva gɛt alɛji fɔ Sapropterin, ɔda mɛrɛsin, it, it day, ɔ tin dɛn we dɛn kin yuz fɔ mek tin nɔ pwɛl?
- If yu gɛt bɛlɛ ɔ yu de plan fɔ gɛt bɛlɛ (dis rili impɔtant).
- If yu na mama we de gi pikin in bɛlɛ .
I rili impɔtant fɔ yu yon wɛlbɔdi fɔ tɛl di dɔktɔ dɛn tin ya ɛn nɔ ayd dɛn, nɔto so?
Aw yu kin yuz dis mɛrɛsin?
Okay, naw mek wi si aw fɔ yuz dis mɛrɛsin ɛksaktɔli. Dis na mɛrɛsin we dɛn kin tek bay mɔt. Dɛn fɔ tek am wit it. Yu fɔ fala di instrɔkshɔn dɛn we de na di prɛskrishɔn lɛbl we yu dɔktɔ dɔn gi yu. Nɔ ɛva tek mɔ ɔ smɔl pas di mɔni we yu dɔktɔ dɔn tɛl yu.
Dis kin kam lɛk paoda. Yu fɔ drink am bay we yu sɔlv am insay wata ɔ apul jus. Aks yu dɔktɔ ɔ fama fɔ di rayt wata ɔ apul jus we yu fɔ tek. Di paoda fɔ sɔlv kwik kwik wan, ivin ɔl. Yu fɔ drink di mɛrɛsin insay 30 minit afta yu dɔn sɔlv am. Nɔ lɛf am fɔ lɔng tɛm pas dat.
Wan ɔda tin, yu kin miks smɔl pan dis paoda bak fɔ mek apul (lɛk apul sos) ɔ pudin. Aks yu dɔktɔ bɔt dat bak, if i fayn fɔ yu fɔ du dat.
Tek yu mɛrɛsin di rayt tɛm, di sem tɛm ɛvride if i pɔsibul. Nɔ tek pas wetin yu dɔktɔ tɛl yu fɔ tek. Dɔn bak, nɔ stɔp fɔ tek yu mɛrɛsin wantɛm wantɛm if yu dɔktɔ nɔ advays yu. If yu du dat, dat kin mek yu sik wɔs.
Aw fɔ gi dis mɛrɛsin to smɔl pikin dɛn
Insay sɔm spɛshal kes dɛm, dɛn kin gi dis mɛrɛsin to pikin dɛm we yɔŋ lɛk wan mɔnt. Bɔt, spɛshal tin dɛn de we wi fɔ tek tɛm wit. Dat min se, tin dɛn de we wi fɔ rili tek tɛm wit. So, tɔk to yu dɔktɔ bɔt dis ɛn fala in instrɔkshɔn dɛn di rayt we. Dɛn kin no di kayn mɛrɛsin we dɛn fɔ tek bay di wet we di pikin gɛt.
Di tin we impɔtant pas ɔl: Dis mɛrɛsin na fɔ yu nɔmɔ. Nɔ gi am to ɔda pɔsin, ilɛksɛf dɛn gɛt di sem sayn dɛn we yu gɛt. Ɔlman in kɔndishɔn difrɛn, so i nɔ fayn fɔ gi dis mɛrɛsin to ɛnibɔdi we yu nɔ go to dɔktɔ fɔs.
Wetin yu kin du if yu mis apɔntinmɛnt fɔ tek mɛrɛsin?
Duya, nɔ panik pan dɛn kayn tɛm dɛn de. If yu mis wan doz, tek am jɔs afta yu mɛmba. Bɔt if i dɔn lɛf smɔl fɔ lɛ yu tek yu nɛks doz (i.e., insay sɔm awa), skip di doz we yu mis ɛn tek di nɛks doz na di tɛm we dɛn dɔn sɛtul. Nɔ ɛva tek dabl doz.Yu fɔ jɔs tek di mɔni we dɛn dɔn tɛl yu fɔ tek fɔ wan de. If yu gɛt dawt bɔt dis, aks yu dɔktɔ ɔ fama.
Wetin fɔ du if yu tek bɔku tin? (Ovados) .
If yu tink se yu dɔn tek bɔku mɛrɛsin, ɔ if yu pikin dɔn tek bɔku mɛrɛsin, go na di ɔspitul imejensi rum we de nia yu wantɛm wantɛm. Ɔ kɔl wan say usay dɛn de kɔntrol pɔyzin. Dis fɔ trit am lɛk imejensi , nɔ delay.
Ɔda mɛrɛsin dɛm wae kin miks wit dis mɛrɛsin (Interactions) .
Sɔm mɛrɛsin dɛn de we nɔ kin wok fayn ɔ kin mek ɔda prɔblɛm we dɛn tek am wit Sapropterin. Wi kin kɔl dɛn intarakshɔn ya. So, tɛl yu dɔktɔ bɔt ɛni mɛrɛsin we yu de tek.
- Avanafil `( Avanafil )`
- Levodopa (na mɛrɛsin fɔ di sik we dɛn kɔl Parkinson) .
- Methotrexate (dɛn kin yuse am fɔ sik dɛn lɛk kansa ɛn at at) .
- Pemetrexed we dɛn kɔl Pemetrexed
- Pyrimethamine (na mɛrɛsin we dɛn kin yuz fɔ mɛn malaria) .
- Sildenafil `(Sildenafil)`
- Tadalafil `(Tadalafil)`
- Vardenafil we dɛn kɔl Vardenafil
Dis list nɔ kin gɛt ɔl di mɛrɛsin dɛn. So, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn, ɛbul mɛrɛsin, ɛn it we yu de it). Tɛl yu dɔktɔ bak if yu de smok, drink rɔm, ɔ yuz drɔgs we nɔ rayt. Sɔm tin kin miks wit yu mɛrɛsin dɛm.
Tin dɛn we yu fɔ tek tɛm wit we yu de tek mɛrɛsin
We yu de tek dis mɛrɛsin, yu dɔktɔ go wach yu sik gud gud wan. Si yu dɔktɔ ɔltɛm ɛn mek dɛn du blɔd tɛst ɔltɛm. Dɛn blɔd tɛst ya kin chɛk yu phenylalanine lɛvɛl ɛn si if di mɛrɛsin de wok fayn. Mɛmba se, i kin tek 4 wik fɔ mek yu bɔdi ebul fɔ tek dis mɛrɛsin. So nɔ panik, jɔs peshɛnt.
If yu sik nɔr de bɛtɛ, ɔr if dɛn de wɔs, tɛl yu dɔktɔ wantɛm wantɛm.
Di tin we impɔtant pas ɔl na dat yu nid fɔ fala spɛshal it we yu de tek dis mɛrɛsin. Yu nid fɔ it it dɛn we nɔ gɛt bɔku phenylalanine. Dis na impɔtant tin fɔ PKU. Bifo yu mek ɛni chenj pan yu it, mek shɔ se yu tɔk to yu dɔktɔ ɔ pɔsin we sabi bɔt it/nyutrishɔn. Dɛn kin gi yu wan list fɔ it dɛn we fayn fɔ yu ɛn advays bɔt aw fɔ pripia yu it.
Imajin, Nalini Akka, we i de gi dis mɛrɛsin to in gyal pikin we gɛt PKU, de kɔntrol in it lɛk aw di dɔktɔ dɔn tɛl am. Bifo i pripia it, i kin luk fɔ it dɛn ɔltɛm we nɔ gɛt bɔku fenilalanin. We i go na di stoa, i kin rid di lɛbl dɛn we de na di it paket dɛn. Da kayn kia de nid fɔ de pan dis sityueshɔn.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, Sapropterin kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt. Bɔt, nɔto ɔlman kin gɛt dɛn. Lɛ wi tek wan luk pan wetin dɛn bi.
Di sayd ɛfɛkt dɛm we yu fɔ tɛl yu dɔktɔ wantɛm wantɛm:
If yu gɛt ɛni wan pan dɛn sik ya, yu fɔ tɛl yu dɔktɔ ɛn nɔ de te. Dɛn tin ya kin rili siriɔs.
- Alɛji: Skin de rɔsh, it, yu skin de rɛd, yu fes, yu lip, yu tɔŋ ɔ yu trot de swel (dis kin mek i nɔ izi bak fɔ blo).
- Fɔ du tin pasmak: I nɔ kin rɛst, i kin fil bad, i kin tɔk pasmak, ɛn i nɔ kin izi fɔ pe atɛnshɔn.
- Inflameshɔn na di εsophagus ɔ bɛlɛ: I nɔ kin want fɔ it igen, yu trot kin at, yu kin fil pen ɔ i nɔ kin izi fɔ swɛla, yu kin bɔn na yu chɛst, yu kin nɔs, yu kin vɔmit, yu kin gɛt dray kɔf, yu kin gɛt stɔl we gɛt blɔd ɔ we gɛt tar.
Sayd ɛfɛkt dɛn we nɔ kin nid dɔktɔ advays, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de:
Bɔku tɛm, dɛn tin ya kin stɔp insay sɔm dez. Bɔt if dɛn kɔntinyu fɔ du dat, ɔ if dɛn de mɔna yu, tɛl yu dɔktɔ.
- Kɔf
- Rɔnbɛlɛ
- Ed de at
- Nos we de rɔn ɔ nos we dɔn stɔp
- Trot de at
- Fɔ vɔmit
Dis list nɔ kin gɛt ɔl di sayd ɛfɛkt dɛn. If yu notis ɛni ɔda tin we nɔ kɔmɔn, aks yu dɔktɔ bɔt am.
Aw yu kin kip di mɛrɛsin?
I rili impɔtant bak fɔ kip dis mɛrɛsin fayn fayn wan.
- Kip am usay pikin ɛn animal dɛn we yu lɛk nɔ go ebul fɔ rich.
- Stɔr am na rum tɛmpracha (bitwin 20 ɛn 25 digri sɛlshiɔs, bitwin 68 ɛn 77 digri Fahrenheit). Nɔ put am na say we wam ɔ kol pasmak.
- Kip dis mɛrɛsin na di ɔrijinal kɔntena we i kam insay.
- Kip di bɔtul tayt tayt wan fɔ mek di wata nɔ kɔmɔt.
- Nɔ yuz mɛrɛsin we dɔn pas ɛn tek tɛm trowe am. Yu kin aks yu famasi fɔ tɛl yu aw fɔ trowe am fayn fayn wan.
Fɔ dɔn, tin dɛn we wi fɔ mɛmba
Wel, wi don tok plenti abaut Sapropterin, no bi so? Fɔ liv wit wan sik wae dɛn kɔl PKU kin bi prɔblɛm, bɔt wit mɛrɛsin lɛk dis ɛn fayn mɛrɛsin advays, yu ɛn yu pikin kin win da chalenj de.
"Mɛmba se, i rili impɔtant fɔ tek dis mɛrɛsin jɔs lɛk aw di dɔktɔ tɛl yu fɔ tek am, di we aw yu tɛl yu fɔ tek am, ɛn di tɛm we yu tɛl yu fɔ tek am. Dɔn bak, i impɔtant fɔ fala spɛshal it.""If yu du dɛn tu tin ya fayn fayn wan, yu go ebul fɔ kɔntrol yu PKU kɔndishɔn fayn fayn wan ɛn liv wɛlbɔdi layf."
If yu gɛt ɛni kwɛstyɔn, wɔri, ɔ dawt, nɔ kip am to yusɛf, bɔt nɔ fred fɔ aks yu dɔktɔ. Dɛn de de fɔ ɛp yu. Nɔto yu wan de pan dis joyn, wi ɔl de wit yu!
Wi de wish yu ɛn yu pikin gud wɛlbɔdi!
👩🏽 ⚕️ Ɔda kwɛstyɔn dɛn (FAQ dɛn)
💬 Us kayn sik na Phenylketonuria (PKU)?
Dis na wan tin we nɔ kin apin so ɔltɛm we dɛn bɔn pikin dɛn. Pikin dεm we gεt dis sik nכ kin ebul fכ tek di protin we dεn kכl fεnylalanin frכm it, we kin kכmכt na di bren εn kin mek dεn bren pwεl.
💬 Aw fɔ kɔntrol dis sik wit Sapropterin pauda?
We dis mɛrɛsin go insay di bɔdi, i kin bɔn (brɛk dɔŋ) dɛn prɔtin fragmɛnt dɛn de kwik kwik wan, ɛn dis kin mek di pɔyzin we de na di blɔd nɔ de igen. Dis kin protɛkt di pikin in bren.
💬 A nid fɔ fala spɛshal it we a de drink dis?
Yɛs! Ivin if yu tek dis mɛrɛsin, yu fɔ rili gi di pikin spɛshal it we nɔ gɛt bɔku prɔtin (mit, fish, milk, eg). If nɔto dat, dɛn nɔ go ebul fɔ stɔp di damej we de na di bren.
` Sapropterin, Sapropterin, PKU, Phenylketonuria, Phenylketonuria, Phenylalanin, phenylalanin, mɛrɛsin, pikin dɛn wɛlbɔdi, jenɛtik sik dɛn
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt