We di dɔktɔ tɛl yu se yu pikin gɛt wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl Mucopolysaccharidosis type VII, ɔ MPS VII (Sly Syndrome) fɔ shɔt tɛm, yu, as mama ɔ papa, go dɔn rili shɔk ɛn wɔri. Na di sem tɛm, we yu yɛri bɔt di vaysin we dɛn kɔl Vestronidase alfa (brand nem: MEPSEVII) as tritmɛnt fɔ dis, yu fɔ gɛt bɔku kwɛstyɔn dɛn na yu maynd. Na nɔmal tin fɔ tink bɔt tin dɛn lɛk, "Wetin na dis mɛrɛsin? I go ɛp di pikin? Ɛni sayd ɛfɛkt de?" Nɔ fred. Tide, wi go tɔk bɔt dis mɛrɛsin insay simpul langwej we yu go ɔndastand, wit padi biznɛs.
Fɔ tɔk am simpul wan, wetin na Vestronidase alfa?
Tink bɔt wi bɔdi lɛk big faktri. Dis faktri gɛt spɛshal ‘wokman dɛn’ fɔ du difrɛn wok dɛn. Wi kin kɔl dɛn wokman ya ‘ɛnzaym’. pan pikin we gεt kכndyushכn lεk MPS VII, di bכdi nכ de prodyuz wan sכm imכtant εnzym, כ i de prodyuz sכm sכm pan am.
Vestronidase alfa na tritmɛnt we de adrɛs da dɛfisiɛns de . Fɔ tɔk di kɔrɛkt tin, na wan ɛnzaym riplesmɛnt tɛrapi (ERT) . wetin dis vaysin de du na fכ gi di pikin wan εnzym we nכ de mek na in bכdi. We dis ɛnzaym go insay di bɔdi, i de brok di bad tin dɛn we kin gɛda na di bɔdi ɛn ɛp fɔ kɔntrol di sayn dɛm.
De tin wae impɔtant pas ɔl na dat dis nɔr de mɛn dis sik. Bɔt dis tritmɛnt kin ɛp fɔ kɔntrol di sik dɛn, mek di pikin in layf bɛtɛ, ɛn mek di pikin liv fayn layf.
Aw fɔ gi di pikin dis mɛrɛsin?
Dis mɛrɛsin nɔto pil we pɔsin kin swɛla ɔ injekt na os. Dɛn kin gi vestronidase alfa as infushɔn, lɛk salin, insay wan vein .
Dis tin we dɛn kin du kin apin ɔltɛm na ɔspitul ɔ klinik , ɛn dɔktɔ ɛn nɔs dɛn kin wach am gud gud wan. I kin tek sɔm awa. Di mɛdikal tim kin chɛk di pikin in kɔndishɔn ɔltɛm (at rit, blɔd prɛshɔn, ɛn ɔda tin dɛn) we di pikin de gɛt dis tritmɛnt. So yu nɔ nid fɔ wɔri bɔt yu pikin in sef.
Pan ɔl we dɛn kin gi dis tritmɛnt ivin to pikin dɛn we dɛn jɔs bɔn, spɛshal tin dɛn de we dɛn fɔ tek tɛm wit we dɛn nid fɔ fala di pikin in ej ɛn di kɔndishɔn. Yu pikin in dɔktɔ go tɛl yu bɔt dis.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu bigin tritmɛnt
Bifo yu bigin dis tritmɛnt, i rili impɔtant fɔ tɛl di dɔktɔ sɔm tin dɛn bɔt yu pikin in wɛlbɔdi. Dis infɔmeshɔn go sho aw dɛn go trit di pikin ɛn di tin dɛn we dɛn fɔ tek tɛm wit.
| Matter fɔ mek dɛn no bɔt am | Wetin mek dat impɔtant? |
|---|---|
| Ɛni kayn alɛji | Mek shɔ se yu tɛl yu dɔktɔ if yu gɛt ɛni alɛji to vestronidase alfa, ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek yu nɔ pwɛl. Dis go ɛp fɔ mek yu nɔ gɛt siriɔs alɛji. |
| Bɛlɛ ɔ tray fɔ gɛt bɛlɛ | If di pɔsin we de tek di tritmɛnt na yɔŋ pɔsin, i rili impɔtant fɔ tɛl dɛn if i gɛt bɛlɛ ɔ i de tray fɔ gɛt bɛlɛ. |
| Fɔ gi pikin in mama in bɛlɛ | If di mama de gɛt tritmɛnt, i fɔ tɛl di dɔktɔ if i de gi di pikin in bɛlɛ. |
Us tin dɛn wi fɔ tek tɛm wit we wi de gi mɛrɛsin?
Yu fɔ no bɔt bad bad alɛji.
Dis mɛrɛsin kin mek sɔm pikin dɛn gɛt siriɔs alɛji. Fɔ ridyus dis risk, yu dɔktɔ kin disayd fɔ gi yu ɔda mɛrɛsin (fɔ ɛgzampul, antihistamin lɛk piritan, fiva ridyus) lɛk wan awa bifo yu gi yu di Vestronidase alfa vaysin. So fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we.
Doz we dɛn mis
I rili impɔtant fɔ gɛt dis vaysin di tɛm we dɛn dɔn sɛtul am. If fɔ sɔm rizin yu nɔ ebul fɔ go na ɔspitul di de we dɛn dɔn plan fɔ go, kɔl yu dɔktɔ wantɛm wantɛm ɛn mek dɛn no, so dat dɛn go advays yu bɔt di nɛks de we go kam.
Ovados fɔ yuz am
Bikɔs dɛn kin gi dis mɛrɛsin na ɔspitul, di chans fɔ mek dɛn tek am pasmak nɔ kin bɔku. Bɔt if dis apin ɔ yu tink se na so i bi, tɛl di mɛdikal tim wantɛm wantɛm. If yu gɛt ɛni prɔblɛm na os, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital . Ɔ kɛr di pikin go na di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia am.
Prɔblɛm wit ɔda mɛrɛsin dɛn
Dɛn nɔr dɔn stɔdi gud gud wan aw dis mɛrɛsin kin miks wit ɔda mɛrɛsin dɛn. So, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt ɛni ɔda mɛrɛsin, vaytamɛn, ɛbul mɛrɛsin, ɔ sɔpɔtmɛnt we yu pikin de tek. Dɔn bak, nɔ bigin fɔ tek ɛni nyu mɛrɛsin if yu nɔ chɛk yu pikin in dɔktɔ fɔs.
Wetin na di sayd ɛfɛkt dɛm we dis mɛrɛsin kin gɛt?
Lɛk ɛni mɛrɛsin, Vestronidase alfa vaysin kin mek sɔm sayd ɛfɛkt. Pan ɔl we bɔku pan dɛn tin ya na smɔl smɔl tin dɛn, sɔm tin dɛn de we wi fɔ no mɔ bɔt.
| Siriɔs sayd ɛfɛkt dɛm we yu fɔ ripɔt to yu dɔktɔ ɔ nɔs wantɛm wantɛm | |
|---|---|
| Simptom dɛm we gɛt siriɔs alɛji | Skin iritashɔn, ɛkzema, skin rash, it, swel na di lip, tɔŋ ɔ fes. |
| I nɔ izi fɔ blo | I nɔ izi fɔ blo, di chɛst tayt, nɔys we nɔ de we yu de blo. |
| Lɔw blɔd prɛshɔn | Diziz, blu yay, nia fɔ lɔs kɔnshɛns. |
| Sayd ɛfɛkt dɛm wae nɔr kin denja, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Rɔnbɛlɛ | Fɔ mek yu bɔdi wam. |
| Diskɔmfɔt na di say we dɛn injɛkshɔn | Pen, rɛd, ɔ swel rawnd di say we dɛn injekt. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. Apat frɔm dat, if yu notis ɛnitin we nɔ kɔmɔn, nɔ ɛva shem fɔ tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Vestronidase alfa na wan εnzym riplesmεnt tεrapi we de kכntrכl di simptom dεm fכ wan rare kכndyushכn we dεn kכl MPS VII (Sly Syndrome). I nɔ de mɛn di sik.
- Dɛn kin gi dis tritmɛnt as infushɔn insay wan vein na ɔspitul, ɔnda dɔktɔ in sɔpɔtishɔn.
- Bifo yu bigin fɔ trit yu pikin, i rili impɔtant fɔ tɛl di dɔktɔ bɔt ɔl di alɛji dɛn we yu pikin gɛt ɛn ɔda wɛlbɔdi prɔblɛm dɛn.
- If yu gɛt siriɔs alɛji lɛk fɔ swel na yu fes, yu nɔ go ebul fɔ blo, ɔ yu skin de rɔsh we yu de trit yu, tɛl di mɛdikal tim wantɛm wantɛm.
- Nɔ mis di de we yu dɔn plan fɔ trit fɔ ɛni rizin. If yu mis am, kɔl yu dɔktɔ wantɛm wantɛm.
- If yu gɛt ɛni kwɛstyɔn ɔ wɔri bɔt dis mɛrɛsin, tɔk bɔt am wit yu dɔktɔ.
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