Yu ɔ pɔsin we yu sabi gɛt Gaucher sik? If na so, yu dɔktɔ go dɔn tɛl yu bɔt wan mɛrɛsin we dɛn kɔl Velaglucerase Alfa. Di brand nem fɔ dis na VPRIV. Bikɔs na smɔl nem we yu nɔ sabi, yu kin gɛt bɔku kwɛstyɔn dɛn lɛk, "Wetin na dis drɔg?" ɛn "Wetin go apin wit dis?" Nɔ fred ɛnitin. Tide, wi go tɔk bɔt dis mɛrɛsin insay wan rili simpul we, aw i de wok, ɛn wetin fɔ tek tɛm wit.
Wetin na Velaglucerase Alfa?
Fɔ tɔk am simpul wan, dis na mɛrɛsin we dɛn kin gi fɔ mɛn Gaucher sik. Naw, luk, Gaucher sik kin apin we wan ɛnzaym we dɛn kin mek na wi bɔdi na wi bɔdi kin ridyus ɔ nɔ de. Dis ɛnzaym de brok ɛn pul di lipid , we na wan kayn fat we de na wi sɛl dɛn.
So wetin kin apin we dis ɛnzaym dɔn lɔs? Da kayn fat ɔ lipid de kin bigin fɔ gɛda na difrɛn pat dɛn na wi bɔdi, mɔ na say dɛn lɛk di splin , di liva , ɛn di bon dɛn . Na so di sayn dɛm fɔ Gaucher sik kin apin.
Velaglucerase Alfa na da enzym we nɔ de. We dɛn gi dis mɛrɛsin to di bɔdi as injɛkshɔn, i kin go ɛn du di wok fɔ da ɛnzaym we nɔ de. dat min se i de ridyus di amoun fכ di lipid dεm we dεn dכn gɛda. Dɔn di sayn dɛn we de sho se di sik kin go dɔŋ smɔl smɔl. I tan lɛk se wi de gi wi bɔdi wan wɛpɔn we nɔ de bak.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
I rili impɔtant fɔ tɔk to yu dɔktɔ wit ɔl yu at bifo yu bigin dis tritmɛnt. If ɛni wan pan dɛn tin ya apin to yu, yu fɔ rili tɛl yu dɔktɔ .
- Bɔt yu alɛji : If yu gɛt ɛni alɛji, ilɛksɛf na dis mɛrɛsin we dɛn kɔl Velaglucerase, ɛni ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek yu nɔ pwɛl, duya tɛl wi bɔt am.
- If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ: Mek shɔ se yu tɛl yu dɔktɔ bɔt dis.
- If yu na mama we de gi pikin in bɛlɛ: I rili impɔtant fɔ tɛl yu dɔktɔ bɔt dis bak.
I rili impɔtant fɔ yu sef fɔ gi dis infɔmeshɔn to di dɔktɔ. So tɛl ɔltin ɛn nɔ ayd ɛnitin.
Aw yu kin yuz dis mɛrɛsin?
Dis nɔto mɛrɛsin we yu kin tek na os. Dɛn kin gi dis mɛrɛsin insay di bɔdi as injɛkshɔn ( infushɔn ) insay wan vein . Dɛn kin gi dis tritmɛnt na ɔspitul ɔ klinik, ɔnda di sɔpɔtishɔn fɔ dɔktɔ ɔ tren nɔs staf.
Yu kin gi dis to smɔl pikin dɛn?
Yɛs, sɔmtɛm dɛn kin gi dis tritmɛnt to pikin dɛn we ol lɛk 4 ia. Bɔt dɛn kin du am wit spɛshal kia ɛn tek tɛm. If dɛn dɔn gi yu pikin dis mɛrɛsin, tɔk to yu dɔktɔ we de mɛn pikin dɛn bɔt am ɛn no di ditel dɛn.
Wetin a go du if a tek bɔku mɛrɛsin?
Dɛn kin gi dis na ɔspitul, so di chans fɔ mek dis apin rili smɔl. Bɔt if yu tink se yu dɔn tek dis mɛrɛsin tumɔs bay aksidɛnt, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital wantɛm wantɛm, ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
Impɔtant: Dɛn dɔn gi yu dis mɛrɛsin fɔ yu nɔmɔ. Nɔ ɛva sheb am wit ɛni ɔda pɔsin.
Wetin yu kin du if yu mis apɔntinmɛnt fɔ tek mɛrɛsin?
Dis na mɛrɛsin we dɛn nid fɔ tek ɔltɛm. So, i rili impɔtant fɔ go to di dɔktɔ in apɔntinmɛnt ɛn gɛt di tritmɛnt jɔs di de dɛn we i tɛl yu. If fɔ sɔm rizin yu nɔ ebul fɔ go di de we dɛn dɔn plan fɔ go, kɔl yu dɔktɔ ɔ klinik wantɛm wantɛm ɛn tɛl dɛn . Dɛn go tɛl yu wetin fɔ du nɛks.
I kin miks wit ɔda mɛrɛsin dɛn?
Jɛnɛral wan, dɛn nɔ bin dɔn ripɔt se dis mɛrɛsin kin mek big big intarakshɔn wit ɔda mɛrɛsin dɛn.
Bɔt, nɔ jɔs tɛl yu dɔktɔ bɔt di tin dɛn we yu de yuz. Fɔ yu yon sef, gi yu dɔktɔ wan kɔmplit list fɔ ɔltin we yu de yuz.
- Ɔda prɛskrishɔn mɛrɛsin dɛn we yu de tek
- Drug dɛn we nɔ gɛt prɛskrishɔn
- Ayurveda ɔ ɛbul prodakt dɛn `(herbs)`
- Vitamin ɔ ɔda tin dɛn we dɛn kin yuz fɔ it
- Dɔn bak, mek shɔ se yu tɔk if yu de smok, drink rɔm, ɔ yuz ɔda drɔgs.
Tin dɛn we yu fɔ tek tɛm wit we yu de tek mɛrɛsin
We yu de tek dis mɛrɛsin, yu dɔktɔ go de chɛk yu ɔltɛm fɔ si aw yu de du. Mek shɔ se yu go pan dɛn de dɛn de. Tɛl yu dɔktɔ if yu sik nɔr de bɛtɛ ɔr if i tan lɛk se dɛn de wɔs.
Sɔntɛnde dis mɛrɛsin kin mek yu gɛt siriɔs alɛji.Fɔ ridyus dis risk, yu dɔktɔ kin gi yu ɔda mɛrɛsin (lɛk pheniridine) bifo i gi yu dis vaysin. So fala dɛn instrɔkshɔn dɛn di rayt we.
Wetin na di sayd ɛfɛkt dɛm we dis mɛrɛsin kin gɛt?
Lɛk ɛni mɛrɛsin, dis wan kin mek sɔm bad bad tin dɛn apin. Bɔt nɔto ɔlman kin gɛt dɛn. Lɛ wi luk di men tin dɛn we wi fɔ wach fɔ.
| Tayp fɔ di sayd ɛfɛkt | Tɔk bɔt |
|---|---|
| If yu gɛt dɛn sik ya, tɛl yu dɔktɔ wantɛm wantɛm. | |
| Alɛji we pɔsin kin gɛt | Tin dɛm lɛk skin rash, it, swel na yu fes, lip, tɔng, ɔ trot. |
| Tɛl yu dɔktɔ if i kɔntinyu fɔ de ɔ i de mɔna yu. | |
| Kɔmɔn sayd ɛfɛkt dɛn |
|
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu notis ɛnitin we nɔ kɔmɔn apat frɔm dɛn tin ya, tɔk to yu dɔktɔ bɔt am.
Usay yu kin kip di mɛrɛsin?
Yu nɔ nid fɔ wɔri bɔt dis. Bikɔs dɛn nɔ go alaw yu fɔ tek dis mɛrɛsin go na os. Dɛn kin kip am sef wan na ɔspitul ɔ klinik, ɔnda di rayt tɛmpracha kɔntrol.
Mɛsej we dɛn kin kɛr go na os
- Velaglucerase Alfa na wan mɛrɛsin we de tek ples fɔ wan ɛnzaym we nɔ de na di bɔdi fɔ trit Gaucher sik.
- Dɛn kin gi dis as injɛkshɔn tru wan vein na ɔspitul ɔ klinik.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ ɔl yu wɛlbɔdi infɔmeshɔn, ivin ɛni alɛji we yu gɛt ɛn ɛni ɔda mɛrɛsin we yu de tek.
- If yu gɛt alɛji (lɛk we yu skin de rɔsh, we yu de swel) afta yu dɔn tek di mɛrɛsin, tɛl yu dɔktɔ wantɛm wantɛm.
- Nɔ mis di de dɛn we yu dɔn plan fɔ gi yu tritmɛnt. If yu nɔ ebul fɔ go, mek wi no bifo tɛm.
- Tɔk wit yu dɔktɔ opin wan bɔt ɛni kwɛstyɔn, fred, ɔ dawt we yu gɛt bɔt dis mɛrɛsin.
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