Sɔntɛnde wi kin yɛri bɔt sik dɛn we nɔ kin bɔku, we wi nɔ ivin yɛri bɔt dɛn nem. Gaucher’s disease, ɔ `(Gaucher’s Disease)`, na wan pan dɛn kayn sik ya we nɔ kin apin so ɔltɛm we dɛn kin gɛt bikɔs ɔf jɛnɛtik kɔz. Pan ɔl we i nɔ kin izi fɔ liv wit dis kayn sik, bikɔs di mɛrɛsin dɛn we dɛn de yuz tide dɔn go bifo, gud tritmɛnt dɛn de we kin mek dɛn fil fri. Tide wi go tɔk bɔt wan pan dɛn kayn tritmɛnt ya, di `Velaglucerase alfa` vaysin.
Fɔ tɔk am simpul wan, wetin na Gaucher’s Disease?
Fɔ ɔndastand dis, lɛ wi tink bɔt wi bɔdi as big faktri. Insay dis faktri, spɛshal ‘wokman dɛn’ de we de du difrɛn wok fɔ mek ɔltin wok fayn. dis wokman dεm na di wan dεm we wi kכl 'εnzym'. Ɛni ɛnzaym gɛt wan patikyula wok we dɛn dɔn gi am.
Insay pɔsin we gɛt Gaucher sik, wan pan dɛn ɛnzaym ya, ɔ wan pan di wokman dɛn, nɔ kin gɛt am. Dis kin mek sɔm tin dɛn we gɛt fat na di bɔdi nɔ kin ebul fɔ brok fayn fayn wan ɛn pul dɛn kɔmɔt as west. Dɔn dɛn tin ya kin bigin fɔ gɛda smɔl smɔl na di ɔgan dɛn lɛk di liva, di splin, ɛn di bon mɛro. Dis na di men tin wae kin mek pɔrsin gɛt de sik.
So wetin na di wok we dis Velaglucerase alfa vaysin de du?
`Velaglucerase alfa` (brand nem `VPRIV`) tan lɛk `riplesmɛnt woka` we sayɛnsman dɛn dɔn mek na di lɛbɔraytri fɔ tek di ples fɔ di wokman we nɔ de na di faktri. fכ bi prεsis, dis na εnzym we dεn mek artificially fכ riples di `enzyme` we Gaucher pasεnshכn dεm nכ gεt na dεn bכdi.
We dɛn gi dis mɛrɛsin to di bɔdi, i kin tek di wok we bin dɔn stɔp, i kin brok di fat we de na di bɔdi, ɛn ɛp fɔ kɔntrol di sayn dɛm.
Di tin we impɔtant pas ɔl: Dis nɔto mɛrɛsin fɔ di sik we dɛn kɔl Gaucher. Bɔt i kin ɛp fɔ kɔntrol di sayn dɛm, fɔ ridyus di ɔgan dɛm we de pwɛl, ɛn ɛp yu fɔ liv bɛtɛ layf.
Aw dɛn kin gi dis mɛrɛsin?
Dis nɔto mɛrɛsin we yu kin yuz na os. Velaglucerase alfa na injεkshכn we dεn gi as salin sכlushכn insay wan vein (infushכn insay wan vein). Dɛn kin gi dis tritmɛnt na ɔspitul ɔ spɛshal klinik, ɔnda di sɔpɔtishɔn fɔ di mɛdikal wokman dɛm. So no rizin nɔ de fɔ wɔri bɔt yu sef.
Tin dɛm fɔ tɛl yu dɔktɔ bifo yu bigin tritmɛnt
I rili impɔtant fɔ mek yu dɔktɔ no yu kɔmplit wɛlbɔdi istri fɔ no if dis tritmɛnt rayt fɔ yu ɛn i nɔ bad. Mek shɔ se yu tɛl dɛn bɔt dɛn tin ya mɔ.
- Alɛji dɛn we yu gɛt:If yu bin dɔn gɛt ɛni alɛji fɔ ɔda mɛrɛsin dɛn, mɔ imiglucerase (we na di sem mɛrɛsin), it dɛn, day, ɔ tin dɛn we de mek yu nɔ gɛt am, mek shɔ se yu tɛl yu dɔktɔ bɔt dɛn.
- Bɛlɛ: If yu gɛt bɛlɛ, ɔ yu de wet fɔ bɔn pikin insay di nɛks tɛm, yu fɔ tɛl yu dɔktɔ.
- Fɔ gi pikin in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ, tɛl yu dɔktɔ bɔt dis bak.
- Ɔda sik ɛn mɛrɛsin dɛn: Gi yu dɔktɔ wan kɔmplit list fɔ ɛni ɔda mɛrɛsin (we dɛn gi yu ɔ we yu nɔ de bay na kɔt), ɛbul prɔdak, ɛn vaytamɛn dɛn we yu de tek. I impɔtant bak fɔ tɛl yu dɔktɔ if yu de smok ɔ drink rɔm.
Yuz fɔ pikin dɛn
Sɔntɛnde dɛn kin gi dis mɛrɛsin to pikin dɛn we ol lɛk 4 ia, bɔt na ɔnda spɛshal dɔktɔ advays ɛn sɔpɔtishɔn nɔmɔ. If yu de tink bɔt fɔ gi yu pikin dis tritmɛnt, tɔk to yu dɔktɔ we de mɛn pikin dɛn bɔt am.
Wetin na di sayd ɛfɛkt dɛm we dis mɛrɛsin kin gɛt?
Lɛk ɛni mɛrɛsin, di `Velaglucerase alfa` vaysin kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt. Bɔt, nɔto ɔlman kin gɛt dɛn. Wi kin sheb dɛn tin ya to tu men grup dɛn. Sɔm dɛn kin siriɔs ɛn dɛn fɔ ripɔt dɛn wantɛm wantɛm. Sɔm na nɔmal tin ɛn dɛn go go insay sɔm dez.
| Sayd ɛfɛkt we pɔsin kin gɛt | Wetin yu nid fɔ du |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we yu fɔ ripɔt to yu dɔktɔ ɔ nɔs wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt (Skin iritashɔn, it, swel na di fes, lip, tɔng) | Dɛn tin ya kin apin we dɛn de gi di mɛrɛsin ɔ afta dɛn dɔn gi am. Notis di wan dɛn we de wok na di dɔktɔ wantɛm wantɛm . |
| Prɔblɛm fɔ blo | Dis kin bi wan siriɔs sayn. Ripɔt wantɛm wantɛm . |
| Diziz, ay ɔ lɔw blɔd prɛshɔn, at bit kwik kwik wan | If dis apin we dɛn de gi di mɛrɛsin, tɛl di nɔs ɔ dɔktɔ wantɛm wantɛm. |
| Blɔd ɔ brus we nɔ kɔmɔn | Tɛl yu dɔktɔ if yu gɛt brus we yu nɔ ɛksplen ɔ if i nɔ izi fɔ yu fɔ stɔp fɔ blɔd. |
| Kɔmɔn sayd ɛfɛkt dɛm wae dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu ɔr de mɔna yu | |
| Ɛd we de at, bɔdi we de at, bak pen, bon ɔ jɔyn pen | Dɛn tin ya kin apin ɔltɛm. If dɛn kɔntinyu fɔ tɔk to yu dɔktɔ. |
| Fiva, kol, trot we de at | I kin apin di de we dɛn gi di mɛrɛsin ɔ leta. Tɛl yu dɔktɔ if i de mɔna yu. |
| Nɔs, bɛlɛ pen | Bɔku tɛm, i kin go. If i kɔntinyu fɔ de, tɛl yu dɔktɔ. |
| Rɛd, it, ɔ pen na di say we dɛn injekt | Dis kin wɛl insay wan ɔ tu dez. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu gɛt ɛnitin we nɔ kɔmɔn, nɔ fred fɔ tɔk to yu dɔktɔ bɔt am.
Ɔda tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt
- Fɔ gɛt tritmɛnt di rayt tɛm: Fɔ mek yu gɛt di bɛst pan dis tritmɛnt, i rili impɔtant fɔ gɛt tritmɛnt di rayt tɛm ɛn di rayt tɛm. If yu nɔ ebul fɔ go na ɔspitul di de we yu dɔn plan fɔ go, tɛl di dɔktɔ ɔ ɔspitul bifo tɛm ɛn sɛtul fɔ go na di ɔspitul fɔ di nɛks de.
- Di tɛst dɛn we dɛn kin du fɔ mɛn pipul dɛn:Di dɔktɔ go chɛk yu ɔltɛm fɔ si aw di tritmɛnt de wok fayn ɛn aw i de afɛkt yu bɔdi. So, nɔ mis ɛni klinik visit.
- Ɔvados: Dis na mɛrɛsin we ɔspitul kin gi, so di chans fɔ mek dis apin rili smɔl. Bɔt if yu tink se yu dɔn tek dis mɛrɛsin tumɔs, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kolombo Nashɔnal Ospital , ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
- Dis na fɔ yu nɔmɔ: Dɛn dɔn gi yu dis mɛrɛsin fɔ yu kɔndishɔn ɛn di kayn bɔdi we yu gɛt. So, nɔ sheb dis mɛrɛsin wit ɛni ɔda pɔsin fɔ ɛni rizin.
Mɛsej we dɛn kin kɛr go na os
- Velaglucerase alfa na wan sεntetik εnzym tritmεnt we dεn kin yus fכ kכntrכl di simptom dεm fכ Gaucher in sik.
- Pan ɔl we dis nɔ kin mɛn di sik ɔltogɛda, i kin ɛp fɔ mek di sikman dɛn layf bɛtɛ bad bad wan.
- Dɛn kin gi dis tritmɛnt tru wan vein na ɔspitul, so yu nɔr nid fɔ wɔri bɔt yu sef.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ bɔt ɔl yu alɛji, ɔda mɛrɛsin dɛn we yu de tek, ɛn aw yu gɛt wɛlbɔdi.
- If siriɔs sayd ɛfɛkt (di at fɔ blo, alɛji) apin, tɛl di dɔktɔ dɛn wantɛm wantɛm.
- I rili impɔtant fɔ de kɔntakt yu dɔktɔ ɔltɛm ɛn go na di klinik dɛn we dɛn dɔn sɛtul fɔ go.
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