Yu ɔ sɔmbɔdi na yu famili gɛt wan sik we dɛn kɔl Phenylketonuria? If na so, yu dɔktɔ go dɔn gi yu wan mɛrɛsin we dɛn kɔl Pegvaliase. Bikɔs dis na sɔm spɛshal mɛrɛsin, i nɔmal fɔ gɛt sɔm kwɛstyɔn ɛn wɔri bɔt am. So tide, lɛ wi tɔk bɔt dis mɛrɛsin ɛn di tin dɛn we yu fɔ no bɔt we yu de yuz am.
Wetin na dis Pegvaliase vaysin?
Fɔ tɔk am simpul wan, Phenylketonuria (PKU) na wan sik we wi bɔdi nɔ kin ebul fɔ dayjɛst wan amino asid we dɛn kɔl phenylalanine fayn fayn wan. Dis na sɔntin we kin de na di it dɛn we wi kin it we gɛt bɔku prɔtin. we dis fεnylalanin de kכmכt na di bכdi fכ pכsin we gεt PKU, i de bכku insay di bכdi εn i kin mek dεn pwεl, spεshal wan to di bren, as tεm de go.
So, wetin dis Pegvaliase injεkshכn de du na fכ ridyus di lεvεl dεm fכ da fεnylalanin we dεn nכ want, we pasmak na di bכdi. I kin kam ɔnda di brand nem Palynziq.
Bɔt i impɔtant fɔ mɛmba dis: Dis nɔto mɛrɛsin fɔ ɔlman. Bɔt i kin ɛp fɔ kɔntrol di bad tin dɛn we de na di blɔd ɛn fɔ mek di sik nɔ pwɛl bɛtɛ.
Tin dɛn we yu fɔ tɛl yu dɔktɔ bifo yu tek mɛrɛsin
Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ tɔk to yu dɔktɔ bɔt dɛn tin ya klia wan ɛn ɔnɛs wan. Nɔ ayd ɛnitin.
- Tɛl wi if yu gɛt ɛni alɛji to Pegvaliase ɔ ɛni ɔda mɛrɛsin, it, ɔ day.
- If yu gɛt bɛlɛ ɔ yu op fɔ gɛt bɛlɛ, mek shɔ se yu tɔk am.
- If yu na mama we de gi pikin in bɛlɛ, tɛl yu dɔktɔ bɔt dat bak.
Bay dis infɔmeshɔn, i go izi fɔ di dɔktɔ fɔ disayd if dis mɛrɛsin fayn fɔ yu ɔ nɔ rayt.
Aw fɔ yuz di vaysin kɔrɛkt wan?
Dis na injɛkshɔn we dɛn kin put ɔnda di bɔdi. Bɔku tɛm, yu dɔktɔ ɔ nɔs go gi yu klia instrɔkshɔn bɔt aw fɔ gi am to yusɛf na os. I rili impɔtant fɔ fala dɛn instrɔkshɔn ya di rayt we.
- Tek di rayt doz, di rayt tɛm: Tek di mɛrɛsin nɔmɔ we ɛn di rayt amɔnt lɛk aw yu dɔktɔ tɛl yu. Nɔ ɛva tek pas di mɔni we dɛn tɛl yu fɔ tek.
- Trowe nidul ɛn sirinj dɛn fayn fayn wan: Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti. Bifo dat, put dɛn insay spɛshal kɔntena we gɛt shap tin dɛn. If yu nɔ gɛt wan, aks yu dɔktɔ fɔ wan.
- Speshal infɔmeshɔn liflet (MedGuide):Bifo ɛni tritmɛnt, dɛn go gi yu wan spɛshal ‘MedGuide’, we na wan smɔl buk we gɛt di ditel dɛn bɔt di mɛrɛsin. Rid am gud gud wan ɔltɛm.
Wetin a go du if a mis wan doz fɔ mɛrɛsin?
If yu mis wan doz wantɛm wantɛm, nɔ wɔri. Nɔ tek di doz we yu mis. Tek di nɛks doz na yu rɛgyula tɛm. Nɔ ɛva tek dabl doz.
Wetin a go du if a tek di mɛrɛsin pasmak?
If yu tink se yu dɔn tek bɔku mɛrɛsin, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kɔlɔmbɔ Nashɔnal Ospital, ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu. Dis na imejensi, nɔ delay.
Tin dɛn we yu fɔ tek tɛm mɔ we yu de yuz dis mɛrɛsin:
Dis pat rili impɔtant. Yu fɔ tek tɛm wit dɛn tin ya ɔl di tɛm we yu de yuz dis mɛrɛsin.
Sivɛri Alɛji Riakshɔn
Di men ɛn siriɔs risk fɔ dis mɛrɛsin na di pɔsibiliti fɔ gɛt siriɔs alɛji, ɔ insay mɛrɛsin, anafylaksis. Dis na imejensi we kin mek pɔsin in layf de pan denja.
Fɔ dis rizin, bɔku tɛm yu dɔktɔ go gi yu wan epinephrine auto-injector, we na spɛshal injɛkshɔn we yu kin yuz if ɛnitin apin. Yu fɔ kip am wit yu ɔltɛm.
Imajin se yu gɛt shot ɛn insay shɔt tɛm, i nɔ kin izi fɔ yu fɔ blo, yu fes ɛn yu lip dɛn kin swel, ɛn yu kin fil lɛk se yu ed de tɔn. Dat kin min se yu gɛt siriɔs alɛji. If dat apin, yu fɔ gɛt da epinephrine shot de wantɛm wantɛm ɛn go na ɔspitul in imejensi rum (ETU) kwik kwik wan.
Bikɔs ɔf dis risk, bɔku tɛm yu dɔktɔ go tɛl yu fɔ gɛt pɔsin wit yu di tɛm we dɛn de gi yu di injɛkshɔn ɛn fɔ wan awa afta dɛn dɔn gi yu di injɛkshɔn. Dis na fɔ mek if yu gɛt siriɔs alɛji, da pɔsin de go ɛp yu ɛn kɛr yu go na ɔspitul kwik kwik wan.
Di dɔktɔ chɛk-ap ɔltɛm ɛn kɔntrol di it we dɛn de it
- Mɛdikal tɛst: Yu dɔktɔ go de wach yu ɔltɛm we yu de tek dis mɛrɛsin. I go ɔda bak fɔ mek dɛn du blɔd tɛst ɔltɛm (blɔd wok) fɔ chɛk di lɛvɛl we di phenylalanine de na yu blɔd. Nɔ skip dɛn tin ya.
- Dayt: Yu mɛmba we wi bin de tɔk bɔt di spɛshal it we yu nid fɔ fala fɔ PKU? We yu de tek dis mɛrɛsin, yu fɔ fala di spɛshal it we dɛn dɔn tɛl yu bak. Nɔ mek ɛni chenj pan yu it we yu nɔ go to yu dɔktɔ.
Di sayd ɛfɛkt dɛn we di mɛrɛsin kin gɛt
Lɛk ɛni mɛrɛsin, dis wan kin gɛt sɔm bad bad tin dɛn. Nɔ wɔri, bɔt i impɔtant fɔ no bɔt dɛn tin ya.
| Sayd ɛfɛkt/simptom | Tɔk bɔt |
|---|---|
| If yu gɛt dɛn sik ya, tɛl yu dɔktɔ wantɛm wantɛm. | |
| Siriɔs alɛji dɛn | Skin rash, i kin it bad bad wan, yu lip, yu tɔng, yu fes kin swel, yu nɔ kin ebul fɔ blo. |
| Chɛst de pen ɔ tayt | Fɔ fil lɛk se yu chɛst de kɔnstrikt we yu de blo. |
| Di at we de blo | Fɔ fil lɛk se yu at de bit fast ɔ yu at de bit de chenj. |
| Di sayn dɛn we de sho se pɔsin in blɔd prɛshɔn dɔn dɔŋ | Fɔ fil diziz, layt ed, fɔ fɔdɔm, fil taya we nɔ kɔmɔn. |
| Ɔda siriɔs sayn dɛn | Vomit, joyn pen, skin blist ɔ peel, ɛn kɔnfyushɔn. |
| If dɛn sayn ya de kɔntinyu ɔ yu de mɔna yu, tɛl yu dɔktɔ. | |
| Riakshכn dεm na di sayt we dεn de injεkshכn | Rɛd, it, pen, ɔ swel usay dɛn gi di injɛkshɔn. |
| Kɔmɔn sayd ɛfɛkt dɛn | Ed pen, nɔs, bɛlɛ at, dayarɛa, kɔf, trot we de at, ia we de lɔs, taya. |
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Yes, sɔm mɛrɛsin kin intarakt wit dis vaysin. fכ egzampl, tin dεm lεk di mεdroxyprogesterone acetate vaccine, we dεn kin yus fכ bכn pikin כ כmon tεrapi.
Dis nɔto wan kɔmplit list. So, tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn). Dɔn bak, tɛl yu dɔktɔ if yu de smok ɔ drink rɔm.
Aw fɔ kip mɛrɛsin fayn fayn wan?
Dis na tin bak we rili impɔtant. Fɔ mek di mɛrɛsin kɔntinyu fɔ gɛt di kwaliti, dɛn fɔ kip am fayn fayn wan.
- Frij: Stɔ di mɛrɛsin na frij we di tɛmpracha de bitwin 2 ɛn 8 digri sɛlshiɔs. Nɔ ɛva kip am na friza.
- Rum tɛmpracha: If nid de, yu kin kip dis mɛrɛsin na rum tɛmpracha (20-25 digri sɛlshiɔs) fɔ te 30 dez.
- Di tin we impɔtant pas ɔl: I rili impɔtant fɔ mek yu nɔ put mɛrɛsin bak na frij afta dɛn dɔn pul am na frij. If dɛn kip am na rum tɛmpracha, dɛn fɔ yuz am insay 30 dez. Afta 30 dez, trowe ɛni mɛrɛsin we lɛf fayn fayn wan.
- Nɔ yuz mɛrɛsin we dɔn pas.
Mɛsej we dɛn kin kɛr go na os
- Di Pegvaliase vaysin de wok bay we i de ridyus di lɛvɛl fɔ phenylalanine na di blɔd fɔ pipul dɛn we gɛt PKU. I nɔ de mɛn di sik ɔltogɛda.
- Di men risk fɔ dis mɛrɛsin na wan siriɔs alɛji (anaphylaxis). Ɔltɛm kip di epinephrine injɛkshɔn we dɛn gi yu na yu an.
- Fɔ fala di spɛshal it we yu dɔktɔ tɛl yu fɔ it we yu de tek dis mɛrɛsin.
- Tɛl yu dɔktɔ bɔt ɔl di ɔda mɛrɛsin dɛn, vaytamɛn dɛn, ɛn tradishɔnal mɛrɛsin dɛn we yu de tek.
- Stɔr di mɛrɛsin fayn fayn wan na frij. Nɔ put di mɛrɛsin bak na frij wans dɛn dɔn pul am.
- If yu gɛt ɛni kwɛstyɔn ɔ tin we de mɔna yu, nɔ panik ɛn tɔk to yu dɔktɔ ɔltɛm.
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