Yu kin gɛt pen ɔltɛm, yu kin swɛla, ɔ yu kin swɛla na yu an ɛn fut? Sɔntɛnde, dɛn tin ya kin kam bikɔs ɔf wan patikyula mɛrɛsin na wi bɔdi. So tide wi go tɔk bɔt di Patisiran vaysin, we dɛn kin gi as tritmɛnt fɔ dis kayn sik. Dis na smɔl spɛshal mɛrɛsin, so i rili impɔtant fɔ mek yu no dis gud gud wan.
Wetin na dis Patisiran? Wetin i min?
Fɔ tɔk am simpul wan, Patisiran na mɛrɛsin fɔ pipul dɛn we gɛt wan sik we gɛt wan nem we rili lɔng we dɛn kɔl hereditary transthyretin-mediated amyloidosis (hATTR) . Wi go kol am hATTR fo shot.
Okay, so wetin na hATTR? Dis na jεnεtik kכndyushכn we de pas dכn tru jεnereshכn. Wi liva de mek wan prɔtin we dɛn kɔl TTR. Nɔmal wan, dis nɔto prɔblɛm. bכt pan pכsin we gεt hATTR, dis TTR protin de fold kכrekt, kכlכm togeda, εn de dכpכsit insεf na difrεn ples dεm na di bכdi, spεshal wan arawnd di nεv dεm. I tan lɛk dɔti we de bɔku na wata paip. Wi kin kɔl dis amyloid dipɔsit.
We dis prɔtin de gɛda rawnd di nɛv dɛn, i de pwɛl dɛn. Na dat mek di sayn dɛm wae wi bin dɔn tɔk bɔt, lɛk pen, nɔr de fil fayn, ɛn nɔr de fil fayn na di an ɛn fut dɛm, de sho.
so wetin Patisiran de du na fכ εp fכ stכp di prodakshכn fכ da fכlt TTR protin de. I tan lɛk se yu stɔp di prɔblɛm rayt usay i bigin. Dɔn di nyu prɔtin dɛn we de na di bɔdi kin go dɔŋ, ɛn smɔl smɔl di sayn dɛn kin bigin fɔ kɔntrol am.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Bifo yu dɔktɔ disayd fɔ gi yu dis mɛrɛsin, sɔm tin dɛn de we yu fɔ rili tɛl am. Nɔ ayd dɛn tin ya, bikɔs dɛn rili impɔtant fɔ yu sef.
- Bɔt yu alɛji: If yu gɛt ɛni alɛji, nɔto jɔs fɔ dis Patisiran mɛrɛsin, bɔt bak fɔ ɛni ɔda mɛrɛsin, it, tin dɛn we de mek yu nɔ pwɛl, ɔ fɔ mek yu gɛt kɔlɔ, mek shɔ se yu tɛl wi bɔt am.
- If yu gɛt bɛlɛ ɔ yu de plan fɔ gɛt bɛlɛ: If yu dɔn gɛt bɛlɛ, yu de tray fɔ gɛt bɛlɛ, ɔ yu gɛt ɛni saspek se yu go gɛt bɛlɛ, tɛl yu dɔktɔ bifo yu bigin dis mɛrɛsin.
- If yu na mama we de gi pikin in bɛlɛ: If yu de gi yu pikin in bɛlɛ, tɛl yu dɔktɔ bɔt dat bak.
If yu gi yu dɔktɔ dis infɔmeshɔn kɔrɛkt wan, dat go rili ɛp am fɔ gi yu di bɛst tritmɛnt we sef.
Aw a go gi yu dis mɛrɛsin?
Patisiran no bi pill we yu tek go haus. DisWan infushɔn we dɛn kin put insay di bɛlɛ. Dis min se dɛn kin put di mɛrɛsin smɔl smɔl insay wan pan yu vein dɛn tru wan tiub, we fiba salin.
Dis tritmɛnt na ɔspitul ɔ klinik nɔmɔ dɛn kin du . Dɔktɔ ɔ nɔs wokman we tren go gi yu am. So natin nɔ de fɔ wɔri bɔt.
Wetin fɔ du if yu tek di mɛrɛsin pasmak?
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, go na ɔspitul in Imejɛnsi Yunit (ETU) wantɛm wantɛm. Ɔ, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital fɔ advays.
Wetin a go du if a mis di de we a fɔ tek di mɛrɛsin?
I rili impɔtant fɔ tek dis mɛrɛsin ɔltɛm . So, mek shɔ se yu go na ɔspitul di de dɛn we dɛn dɔn tɛl yu fɔ du. If yu nɔ ebul fɔ go fɔ ɛni imejensi, kɔl yu dɔktɔ ɔ klinik wantɛm wantɛm ɛn tɛl dɛn.
Speshal tin dɛn we yu fɔ no bɔt we yu de tek mɛrɛsin
Sɔm tin dɛn de we yu fɔ tek tɛm wit we yu de tek dis mɛrɛsin.
1. Riakshɔn dɛn we pɔsin kin du wit di infushɔn
Dis na di tin we impɔtant pas ɔl. Sɔm pipul dɛn kin gɛt sɔm riakshɔn we dɛn gi dis mɛrɛsin insay dɛn bɛlɛ ɔ jɔs afta dɛn gi am. Wi kin kɔl dɛn infushɔn riakshɔn ya . Dɛn tin ya kin bi:
- Chɛst de pen
- I nɔ kin izi fɔ yu fɔ blo
- Fɔ fil lɛk fɔ spin (vertigo) .
- Fɔ fil se yu wam
Fɔ ridyus dis risk, yu dɔktɔ kin gi yu ɔda mɛrɛsin (lɛk alɛji mɛrɛsin ɔ paracetamol) lɛk wan awa bifo i gi yu dis vaysin. So fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we. Di mɛdikal wokman dɛm go tek tɛm wach yu kɔndishɔn we dɛn de gi yu di mɛrɛsin.
2. Chenj na di yay we yu de si
If yu notis ɛni chenj na yu yay, mɔ na nɛt, ɔ if yu yay fil dray, tɛl yu dɔktɔ wantɛm wantɛm.
3. Vitamin A we de na di bɔdi
If yu tek dis mɛrɛsin, dat kin mek yu gɛt smɔl vaytamɛn A. Vitamin A impɔtant fɔ wi yay ɛn wi skin wɛlbɔdi. So, yu dɔktɔ kin gi yu wan vaytamɛn A sɔpɔtmɛnt fɔ mek yu tek ɛvride. Tek di rayt doz we yu dɔktɔ tɛl yu fɔ tek. I fayn bak fɔ it tin dɛn we gɛt vaytamɛn A (lɛk karɔt, swit pata, spinach). Tɔk to yu dɔktɔ bɔt dis.
Sayd ɛfɛkt dɛn we kin apin bikɔs ɔf mɛrɛsin
Lɛk ɛni mɛrɛsin, Patisiran kin mek sɔm sayd ɛfɛkt dɛn. Nɔto ɔlman kin gɛt dɛn. Bɔt i impɔtant fɔ no bɔt dɛn. Wi go sheb dɛn to kategori dɛn we izi fɔ ɔndastand.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn ɛn wetin fɔ du |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Sivɛri Alɛji Riakshɔn | Skin rash, it, swel na di fes, lip, tong ɔ trot, i nɔ izi fɔ blo. If ɛni wan pan dɛn tin ya apin, go to dɔktɔ wantɛm wantɛm. |
| Riakshɔn dɛn we pɔsin kin du wit di infushɔn | Chɛst pen, at fɔ blo, shɔt briz, fɔdɔm, diziz. If yu gɛt ɛni wan pan dɛn sayn ya we yu de tek di mɛrɛsin, tɛl di dɔktɔ ɔ nɔs wantɛm wantɛm. |
| Di sayn dɛm we pɔsin kin gɛt we i nɔ gɛt vitamin A | Chenj we yu de si (especially we yu nɔ de si fayn na nɛt), yu yay de dray, yu skin de dray, yu kin gɛt infɛkshɔn ɔltɛm. Ripɔt dɛn tin ya to yu dɔktɔ. |
| Tin dɛm wae nɔr kin denja, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Pen na di jɔyn dɛn | Pen na di jɔyn dɛn. |
| Di mɔsul dɛn we de spam | Wan filin wantɛm wantɛm we di mɔsul dɛn de twist. |
| Trot de at | Trot de at. |
| Bɛlɛ we nɔ fayn | Diskɔmfɔt lɛk bɛlɛ at ɛn nɔs. |
Dis list nɔ kin gɛt ɔl di sayd ɛfɛkt dɛn. If yu notis ɛnitin we nɔ kɔmɔn, tɔk to yu dɔktɔ bɔt am.
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?
Stɔdi dɛn we dɛn dɔn du te naw nɔ dɔn sho se Patisiran de mek ɛni big prɔblɛm wit ɔda mɛrɛsin dɛn. Bɔt i bɛtɛ fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn ɛn ɛbul mɛrɛsin dɛn).
Mɛsej we dɛn kin kɛr go na os
- Patisiran na wan spεsifi k tritmεnt fכ wan nyurolכjik kכndishכn we wan jin we dεn kכl hATTR kכz.
- Bifo yu bigin dis mɛrɛsin, mek shɔ se yu tɛl yu dɔktɔ bɔt ɛni alɛji we yu gɛt ɛn if yu gɛt bɛlɛ ɔ yu de gi pikin in bɛlɛ.
- If yu gɛt pen na yu chɛst ɔ yu nɔ izi fɔ blo we yu de tek di mɛrɛsin insay yu bɛlɛ, tɛl di dɔktɔ dɛn wantɛm wantɛm. Dis kin bi wan infushɔn riakshɔn.
- If yu notis ɛni chenj na yu yay, tɛl yu dɔktɔ bɔt am. Tek di vaytamɛn A sɔpɔt jɔs lɛk aw yu dɔktɔ tɛl yu.
- Nɔ skip di de dɛn we yu dɔn sɛtul fɔ tek yu mɛrɛsin. If yu gɛt ɛni prɔblɛm, duya tɛl di klinik bifo tɛm.
- If yu gɛt ɛni kwɛstyɔn ɔ dawt bɔt dis mɛrɛsin, nɔ ɛva fred fɔ aks yu dɔktɔ.
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