Wetin kin apin if di bɔdi stɔp ɔ stɔp fɔ mek wan spɛshal ɛnzaym we de ɛp fɔ mek wi bon ɛn tit dɛn strɔng? I rili nɔ simpul lɛk aw yu go tink. haypofosfatasia (HPP) na wan sik we nɔ kin apin so ɔltɛm. So, wan spɛshal vaysin we dɛn kin gi fɔ trit dis sik na in dɛn kɔl Asfotase Alfa. Tide, wi go tɔk bɔt dis mɛrɛsin, aw fɔ yuz am, wetin fɔ tek tɛm, ɛn ɔl ɔda tin dɛn na wan rili simpul we.
Wetin kin rili apin wit dis mɛrɛsin?
Fɔ tɔk am simpul wan, dis na tritmɛnt fɔ chenj di ɛnzaym dɛn . Tink bɔt am, fɔ mek sɔntin na wi bɔdi wok fayn, i nid fɔ gɛt wan ɛnzaym we i nid. Pɔsin we gɛt HPP nɔ gɛt dis ɛnzaym we de ɛp fɔ bil strɔng bon ɛn tit. So, wetin di Asfotase Alfa injεkshכn de du na fכ gi di bכdi di εnzym we nכ de kכmכt na do. Dis tan lɛk fɔ put ɔyl na motoka we in gas dɔn. di εnzym we de kכmכt na dis injεkshכn de εp di bכdi fכ bil strכng bon dεm εn tit dεm bak. Dis mɛrɛsin de bak na di makit ɔnda di brand nem Strensiq.
Tin dɛn we yu fɔ tɛl yu dɔktɔ bifo yu tek mɛrɛsin
Bifo yu bigin dis tritmɛnt, fɔ yu yon sef, sɔm tin dɛn de we yu fɔ tɛl yu dɔktɔ klia wan bɔt. Mek shɔ se yu tɔk bɔt dɛn tin ya.
- Alɛji : If yu gɛt ɛni alɛji to dis Asfotase Alfa mɛrɛsin, ɛni ɔda mɛrɛsin, it, prɛzɛvɛtiv, ɔ day, duya tɛl wi fɔs.
- Bɛlɛ : If yu gɛt bɛlɛ, ɔ yu plan fɔ bɔn pikin jisnɔ, tɛl yu dɔktɔ bɔt am.
- If yu na mama we de gi pikin in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ, yu fɔ tɛl di dɔktɔ bak.
If yu gi yu dɔktɔ dis infɔmeshɔn, dat go rili ɛp am fɔ trit yu fayn ɛn kɔrɛkt wan.
Aw dɛn kin yuz dis vaysin?
Dɛn kin gi dis vaksin bay we dɛn kin put am ɔnda di bɔdi .). Bɔt no rizin nɔ de fɔ mek wi fred dis. Dɛn go tich yu aw fɔ pripia dis vaysin ɛn aw fɔ injɛkt yusɛf kɔrɛkt wan. Di dɔktɔ ɔ di nɔs wokman dɛn go gi yu klia instrɔkshɔn bɔt am.
- Tek di mɛrɛsin we yu gɛt jɔs lɛk aw dɛn rayt am na di lɛbl, di rayt doz, ɛn di rayt tɛm.
- Kɔntinyu fɔ yuz dis mɛrɛsin te yu dɔktɔ tɛl yu fɔ stɔp.
- Rid di instrɔkshɔn dɛn we de kam wit di mɛrɛsin fayn fayn wan. If yu gɛt ɛni kwɛstyɔn, nɔ shek fɔ aks yu dɔktɔ.
Aw yu kin trowe nidul ɛn sirinj dɛn we yu dɔn yuz?
Dis rili impɔtant. Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti. We wi du dat, dat kin mek ɔda pipul dɛn denja. Yu fɔ yuz spɛshal kɔntena fɔ dɛn tin ya, we dɛn kɔl ‘shap kɔntena.’ If yu nɔ gɛt wan, aks yu dɔktɔ bɔt aw fɔ gɛt wan.
Wetin fɔ du if di doz fɔ di mɛrɛsin go ɔp?
If yu tink se yu dɔn tek ɔvados, go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu ɛn nɔ de te . Ɔda we de fɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital. Dis na imejensi ɛn i impɔtant fɔ du sɔntin kwik kwik wan.
Wetin a go du if a mis wan doz fɔ mɛrɛsin?
Nɔ wɔri. If yu mis wan doz, tek am jɔs afta yu mɛmba. Bɔt if i dɔn lɛf smɔl fɔ lɛ yu tek yu nɛks doz, skip di doz we yu mis ɛn tek yu nɛks doz di tɛm we yu de tek am ɔltɛm. Nɔ ɛva tek dɛbul doz fɔ mek di doz we yu mis.
Tin dɛn we yu fɔ tek tɛm wit we yu de tek mɛrɛsin
I rili impɔtant fɔ mek yu gɛt tayt padi biznɛs wit yu dɔktɔ ɔlsay na dis tritmɛnt.
- Chek-ap ɔltɛm: Tɔk to yu dɔktɔ ɔltɛm fɔ si if yu sik de go bifo ɔr de stɔp, ɛn aw yu bɔdi de du tritmɛnt. Atɛnd klinik dɛn di de dɛn we i tɛl yu fɔ du.
- Mɛdikal tɛst : We yu de tek dis mɛrɛsin, yu dɔktɔ go nid fɔ du blɔd ɛn urine tɛst fɔ chɛk aw yu kidni dɛn de wok fayn ɛn fɔ wach ɔda tin dɛn. Nɔ skip dɛn tɛst ya.
- Vision Check : Dɛn kin chɛk yu vishɔn bifo ɛn we dɛn de trit yu. If yu notis ɛni chenj na yu yay (lɛk we yu nɔ de si fayn ɔ we yu nɔ de si fayn), tɛl yu dɔktɔ wantɛm wantɛm.
- Patient Registry: Dɛn kin invayt yu fɔ jɔyn wan lɔng tɛm rɛjista fɔ pasɛnt dɛn we gɛt HPP. Dis go ɛp fɔ gɛda data fɔ ɔndastand di sik ɛn aw fɔ trit am fayn fayn wan. Yu kin aks yu dɔktɔ fɔ no mɔ.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, dis mɛrɛsin kin mek sɔm bad bad tin dɛn apin. Bɔt nɔto ɔlman kin gɛt dɛn. Lɛ wi sheb dɛn tin ya to tu kategori.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Go to dɔktɔ wantɛm wantɛm if yu gɛt sɔm sayn dɛn lɛk we yu skin de rɔsh, it, yu fes, yu lip, yu tɔŋ, ɔ yu trot de swel, ɔ yu nɔ ebul fɔ blo. |
| Kidni ston dɛn | Blɔd na di urine, pen ɔ i nɔ izi fɔ pis, pen na di ɔnda bak ɔ groin. Tɛl yu dɔktɔ if yu gɛt ɛni wan pan dɛn tin ya. |
| Vishɔn lɔs ɔ chenj | If yu notis ɛni chenj we yu de si wantɛm wantɛm, tɛl yu dɔktɔ wantɛm wantɛm. |
| Tin dɛm wae nɔr kin denja, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Chenj dɛn na di say we dɛn de injɛkshɔn | Pen, rɛd, it, ɔ di kɔlɔ we di skin kin chenj kin apin na di say we dɛn injekt am. |
| Lipodistrofi we gɛt di sik | di tisu we de כnda di skin na di say we dεn injεkt de tik, at, כ skata. If dis kɔntinyu, tɛl yu dɔktɔ. |
Aw a fɔ kip di mɛrɛsin?
I rili impɔtant fɔ kip dis mɛrɛsin kɔrɛkt wan.
- Kip fa frɔm pikin ɛn animal dɛn we yu de mɛn.
- Stɔ am na frij. Bɔt nɔ put am na friza. Nɔ mek di mɛrɛsin friz.
- Protɛkt frɔm layt. So, kip am insay di ɔrijinal pak te yu yuz am.
- Afta yu pul di vaysin na frij, gi di vaysin insay 3 awa .
- Trowe di mɛrɛsin dɛn we dɔn pas. Aks yu dɔktɔ fɔ advays bɔt aw fɔ trowe di mɛrɛsin dɛn we dɔn pas ɔ we yu nɔ nid igen, sef wan.
Mɛsej we dɛn kin kɛr go na os
- Asfotase Alfa na εnzym riplesmεnt vaksin we de trit di jεnεtik kכndishכn Hypophosphatasia (HPP).
- Tɛl yu dɔktɔ bɔt ɔl yu alɛji ɛn wɛl bɔdi prɔblɛm dɛn bifo yu bigin fɔ trit yu.
- Lan aw fɔ injɛkt di vaysin kɔrɛkt wan ɛn trowe di nidul dɛn we dɛn dɔn yuz sef wan.
- Go to dɔktɔ wantɛm wantɛm if yu gɛt ɛni bad bad tin lɛk we yu fes swel, i nɔ izi fɔ blo, ɔ we yu de si we yu de si.
- Nɔ skip di tɛst ɛn klinik de we di dɔktɔ tɛl yu fɔ du.
- Ɔltɛm, kip di mɛrɛsin na frij, we nɔ gɛt layt, ɛn insay di fɔs tin we dɛn pak am.
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