Sɔntɛm yu dɔktɔ dɔn tɛl yu ɔ sɔmbɔdi na yu famili bɔt wan nyu mɛrɛsin we yu nɔ no. Dɛn kin kɔl am Olipudase Alfa (Xenpozyme). Dis nɔto kɔmɔn, kɔmɔn drɔg we wi kin yɛri bɔt bɔku tɛm. Dis na drɔg we dɛn kin gi fɔ wan rili patikyula mɛrɛsin. Na dat mek i nɔmal fɔ mek yu gɛt bɔku kwɛstyɔn bɔt am. Yu kin gɛt kwɛstyɔn dɛn bak lɛk "Wetin go apin wit dis?", "Dis sef?", "Wetin na di tin dɛn we yu fɔ tek tɛm wit?" Nɔ wɔri, wi go tɔk klia wan ɛn simpul wan bɔt dis drɔg, wetin i de du, ɛn di tin dɛn we wi fɔ tek tɛm wit.
Wetin kin rili apin wit dis mɛrɛsin?
Dɛn kin yuz dis drɔg fɔ trit wan sik we nɔ kin apin so ɔltɛm na di jɛnɛtiks. Fɔ mɛn pipul dɛn, dɛn kin kɔl am Acid Sphingomyelinase Deficiency , ɔ (ASMD) fɔ shɔt tɛm.
Fɔ tɔk am simpul wan, pipul dɛn we gɛt ASMD nɔ de mek wan ɛnzaym we dɛn kin mek na dɛn bɔdi na dɛn bɔdi. εnzym na wan kayn protin we de εp wit difrεn kεmikכl prכsεs dεm na wi bכdi. we dis patikyula εnzym nכ de, wan spεshal kayn lipid we dεn kכl sphingomyelin de bigin fכ bכku insay imכtant כgan dεm lεk wi liva, splin, εn lכng. Tink bɔt am lɛk se wata paip kin lɔk wit dɔti ɛn leta i kin blok kpatakpata.
Dis na di say we wan mɛrɛsin we dɛn kɔl Olipudase Alfa kam fɔ ɛp. Wetin dis mɛrɛsin de du na fɔ gi di ɛnzaym we nɔ de na di bɔdi frɔm ɔdasay. Dɛn kɔl dis ɛnzaym riplesmɛnt tɛrapi . Dɔn di fat we kin gɛda we nɔ nid kin go dɔŋ smɔl smɔl, dɛn kin kɔntrol di damej we di ɔgan dɛn kin gɛt, ɛn di sayn dɛn kin kɔmɔt.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu yuse dis mɛrɛsin
Bifo yu bigin fɔ tek dis mɛrɛsin, i impɔtant fɔ tɛl yu dɔktɔ bɔt dɛn tin ya. Nɔ ayd dɛn tin ya, bikɔs dɛn rili impɔtant fɔ mek yu sef.
- If yu gɛt alɛji to dis mɛrɛsin, Olipudase alfa, ɛni ɔda mɛrɛsin, it, day ɔ prɛzɛvɛtiv we dɛn ad to it.
- If yu gɛt bɛlɛ, ɔ yu de op fɔ bɔn pikin insay di nɛks tɛm , dis rili impɔtant. Lɛ wi tɔk mɔ bɔt am.
- If yu na mama we de gi pikin in bɛlɛ .
Aw fɔ gi di mɛrɛsin ɛn wetin fɔ no
Dɛn kin gi dis mɛrɛsin as injɛkshɔn insay wan vein. Fɔ tɔk di kɔrɛkt tin, dɛn kin put am insay di bɔdi tru wan vein, jɔs lɛk salin sɔlvushɔn. Dɛn kin du dis prɔses na ɔspitul ɔ klinik, ɔnda di sɔpɔtishɔn fɔ dɔktɔ ɔ tren nɔs staf.
Bɔt sɔntɛnde, yu kin ebul fɔ gɛt am na os. If na so, dɛn go tren yu gud gud wan bɔt aw fɔ pripia am fayn ɛn aw fɔ gi di injɛkshɔn. Yu fɔ fala di instrɔkshɔn dɛn jɔs lɛk aw di dɔktɔ tɛl yu.
Fɔ trowe nidul ɛn sirinj dɛn
Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu de yuz na os na di dɔti we yu kin trowe ɔltɛm . Wan spɛshal kɔntena de we gɛt shap shap fɔ dɛn. If yu nɔ gɛt wan, aks yu dɔktɔ ɔ ɔspitul bɔt wan.
Yu kin gi dis to smɔl pikin dɛn?
Yɛs, dɛn kin gi dis mɛrɛsin to pikin dɛn we dɛn jɔs bɔn ɛn pikin dɛn fɔ sɔm patikyula mɛrɛsin dɛn. Bɔt, sɔm tin dɛn de we wi fɔ tek tɛm wit. So if yu de gi pikin dis mɛrɛsin, tɔk to di dɔktɔ bɔt am gud gud wan ɛn ɛksplen ɔltin.
Wetin fɔ du if dɛn ad di mɛrɛsin in doz?
If yu tink se yu dɔn tek pasmak, nɔ panik ɛn kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Nashɔnal Ospital , ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
Speshal tin dɛn fɔ wach ɛn di sayd ɛfɛkt dɛn
We yu de tek dis mɛrɛsin, yu dɔktɔ go aks yu fɔ kam insay fɔ chɛk-ap ɔltɛm fɔ wach yu kɔndishɔn. Dɛn go nid bak fɔ du tin dɛn lɛk fɔ wok wit blɔd. I kin tek sɔm tɛm fɔ mek yu fil di ful bɛnifit fɔ dis mɛrɛsin, so i impɔtant fɔ peshɛnt wit yu tritmɛnt.
Sɔm pipul dɛn kin gɛt siriɔs alɛji ɔ infushɔn riakshɔn we dɛn gi dɛn dis mɛrɛsin. Fɔ ridyus dis prɔblɛm, yu dɔktɔ kin gi yu ɔda mɛrɛsin (lɛk piritan) bifo i gi yu dis mɛrɛsin. Fɔ fala di instrɔkshɔn dɛn di rayt we.
Bɛlɛ ɛn kɔntrol fɔ bɔn pikin: Dis na pɔynt we rili impɔtant. If yu tek dis mɛrɛsin we yu gɛt bɛlɛ, dat kin mek di pikin gɛt siriɔs prɔblɛm wit di pikin. So, i impɔtant fɔ yuz di rayt we fɔ kɔntrol di pikin we yu de tek dis mɛrɛsin ɛn fɔ 14 dez afta yu dɔn stɔp di mɛrɛsin. Tɔk to yu dɔktɔ bɔt dis ɛn pik di we we go fayn fɔ yu.
Di tebul we de dɔŋ ya de sho di men kayn sayd ɛfɛkt dɛm we kin apin wit dis mɛrɛsin.
| Sayd Efεkt dεm we Olipudase Alfa Vaksin Gεt | |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we yu fɔ ripɔt to yu dɔktɔ wantɛm wantɛm | |
| Alɛji riakshɔn ɔ Angioedema | Skin rash, it, swel na yu fes, yay, lip, tong, an ɔ fut, i nɔ izi fɔ swɛla ɔ blo. |
| Riakshɔn dɛn we pɔsin kin du wit infushɔn | Chɛst pen, i nɔ kin izi fɔ blo, yu kin fɔdɔm, yu kin fil lɛk yu ed de tɔn. |
| Di sayn dɛn we de sho se pɔsin in liva wund | Pen na di ɔp rayt pat na di bɛlɛ, yu nɔ kin want fɔ it, yu nɔ kin fil fayn, yu kin gɛt layt kɔlɔ, yu kin gɛt dak yɔlɔ ɔ brawn urine, yu yay ɔ yu skin kin yɔlɔ, yu kin taya we nɔ kɔmɔn. |
| Sayd ɛfɛkt dɛn we nɔ kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Ɔda tin dɛn we de apin | Kɔf, dayarɛa (vomit), fiva, ed pen, jɔyn pen, nɔs, vɔmit. |
Ɛni prɔblɛm de wit ɔda mɛrɛsin dɛn?
As wi no, dɛn nɔ ripɔt dis mɛrɛsin fɔ mek ɛni big big intarakshɔn wit ɔda mɛrɛsin dɛn. Bɔt nɔ tink se na so i bi. Gi yu dɔktɔ wan kɔmplit list fɔ ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn). Dɔn bak, mek shɔ se yu tɛl yu dɔktɔ if yu de smok ɔ drink rɔm.
Mɛsej we dɛn kin kɛr go na os
- Olipudase Alfa na wan spεsifi k εnzym riplesmεnt tεrapi fכ wan rare jεnεtik kכndyushכn we dεn kכl ASMD.
- Dɛn kin gi dis as injɛkshɔn insay wan vein, bɔku tɛm na ɔspitul.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ bɔt ɔl yu alɛji, di plan fɔ gɛt bɛlɛ, ɛn ɔl di ɔda mɛrɛsin dɛn we yu de tek.
- We yu de tek dis mɛrɛsin, wach fɔ sayn dɛm fɔ siriɔs alɛji, injɛkshɔn riakshɔn, ɔ liva damej (e.g., yu skin yɔlɔ, urine dak). Tɛl yu dɔktɔ wantɛm wantɛm if yu notis ɛni wan pan dɛn sayn ya.
- Nɔ gɛt bɛlɛ we yu de tek dis mɛrɛsin. Tɔk to yu dɔktɔ bɔt di rayt we fɔ kɔntrol di pikin.
- Fɔ fala yu dɔktɔ in instrɔkshɔn dɛn ɛksaktɔli ɛn atɛnd ɔl di klinik apɔntinmɛnt dɛn we dɛn dɔn sɛtul.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt