Bɔku tɛm yu kin fil se yu an ɛn yu fut kin fil lɛk se yu nɔ gɛt bɛtɛ trɛnk, yu kin swɛt, ɔ yu kin bɔn? Sɔntɛnde, yu kin fil lɛk se dɛn say dɛn ya go mek yu nɔ ebul fɔ du natin? Pan ɔl we dɛn tin ya kin tan lɛk se na nɔmal tin, sɔntɛnde, siriɔs rizin kin de biɛn dɛn. Tide wi de tɔk bɔt wan mɛrɛsin we dɛn kin injɛkt tru wan vein ɛn dɛn kin yuz am fɔ trit dis kayn patikyula sik. Dat na Patisiran.
Wetin na dis Patisiran? Wetin i min?
Fɔ tɔk am simpul wan, Patisiran na vaysin. Dɛn kin yuz am fɔ trit nyurolɔjik prɔblɛm dɛn pan pipul dɛn we gɛt wan sik we dɛn kɔl hereditary transthyretin-mediated amyloidosis (hATTR) .
Naw yu kin de wɔnda wetin na hATTR. I rili simpul. Wi ɔl gɛt prɔtin na wi bɔdi. pan pipul dεm we gεt dis hATTR kכndyushכn, wan protin we dεn kכl transtayrεtin de misfold, kכlכp tכgeda, εn deposit insεf lεk mush. Dis dipɔsit kin apin mɔ arawnd di nerv dɛm, at, ɛn ɔda ɔgan dɛm. We dis kin apin, dɛn ɔgan dɛn de, mɔ di nerv dɛn, kin bigin fɔ pwɛl. Na dat mek di sayn dɛm wae wi bin dɔn tɔk bɔt, lɛk wae pɔrsin de fil, pen, ɛn inflamɛns na di an ɛn fut, kin apia.
Di drɔg we dɛn kɔl Patisiran de wok bay we i de ridyus di prodakshɔn fɔ da prɔtin we nɔ fold fayn. Dat min se we dis drɔg go insay di bɔdi, i de kɔntrol di we aw dɛn de mek da bad bad prɔtin de. Dɔn, di we aw da prɔtin de kin gɛda rawnd di nɛv dɛn kin go dɔŋ, ɛn smɔl smɔl dɛn kin kɔntrol di sayn dɛn. Dis drɔg de na di makit ɔnda di nem ONPATTRO .
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Bikɔs dis na spɛshal mɛrɛsin, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi kɔndishɔn bifo yu bigin tritmɛnt. Mek shɔ se yu tɛl dɛn bɔt dɛn tin ya:
- Alɛji: If yu gɛt ɛni alɛji, nɔto jɔs fɔ Patisiran, bɔt fɔ ɛni ɔda mɛrɛsin, it, ɔ tin dɛn we de mek yu nɔ pwɛl, duya tɛl wi bɔt am.
- Bɛlɛ: If yu gɛt bɛlɛ, yu de tray fɔ gɛt bɛlɛ, ɔ yu tink se yu gɛt bɛlɛ, tɛl yu dɔktɔ bifo yu bigin fɔ trit yu.
- If yu na mama we de gi pikin in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ, yu fɔ tɛl di dɔktɔ bak.
Bay dis infɔmeshɔn, di dɔktɔ go disayd if dis tritmɛnt fayn fɔ yu ɔ nɔ fayn fɔ yu ɛn aw fɔ go bifo.
Aw dɛn go gi yu dis mɛrɛsin?
Dis nɔto mɛrɛsin we yu kin kɛr go na os. Patisiran na wan tin we dɛn kin put insay di bɛlɛ. So, na ɔspitul ɔ klinik nɔmɔ dɛn kin gi am, ɔnda di sɔpɔtishɔn fɔ tren mɛdikal wokman dɛn.
Dɛn kin gi dis tritmɛnt wan tɛm ɛvri tri wik. I kin tek lɛk wan ɛn af awa so fɔ injekt di mɛrɛsin insay di bɔdi.
Impɔtant: If yu nɔ ebul fɔ atɛnd di tritmɛnt we yu dɔn sɛtul, duya tɛl yu dɔktɔ ɔ klinik wantɛm wantɛm. I nɔ fayn fɔ skip di tritmɛnt dos dɛm.
Wetin a go du if a tek bɔku mɛrɛsin?
Dɛn kin gi dis na ɔspitul say so di chans fɔ mek dis apin rili smɔl. Bɔt if yu tink se sɔntin dɔn apin, ripɔt am wantɛm wantɛm to di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Nashɔnal Ospital ɔ di Imejɛnsi Tritmɛnt Yunit (ETU) na di ɔspitul we de nia yu.
Tin dɛn we yu fɔ mɛmba we yu de tek mɛrɛsin
I rili impɔtant fɔ tek kia ɔf yu bɔdi fayn fayn wan we yu de trit yu.
- Riakshɔn we dɛn kin du we dɛn put dis mɛrɛsin: Sɔm pipul dɛn kin gɛt riakshɔn we dɛn de gi dis mɛrɛsin na wan vein ɔ jɔs afta dɛn gi am. Fɔ ɛgzampul, yu chɛst kin pen, i nɔ kin izi fɔ blo, ɔ yu kin fil lɛk yu ed de tɔn. Fɔ ridyus dis risk, yu dɔktɔ kin gi yu ɔda mɛrɛsin (lɛk alɛji mɛrɛsin) bifo yu gɛt di Patisiran injɛkshɔn. So fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we. Di mɛdikal wokman dɛm go wach yu gud gud wan we dɛn de gi yu di mɛrɛsin.
- Vitamin A lɛvɛl: Patisiran kin mek di vaytamɛn A lɛvɛl na di bɔdi go dɔŋ. Vitamin A impɔtant fɔ wi yay, fɔ mek wi gɛt wɛlbɔdi, ɛn fɔ mek wi nɔ ebul fɔ fɛt di sik. So, yu dɔktɔ go tɛl yu fɔ tek wan vaytamɛn A tablɛt ɛvride. I rili impɔtant fɔ tek am jɔs lɛk aw dɛn tɛl yu fɔ tek am. Dɔn bak, tɔk to yu dɔktɔ bɔt it dɛn we gɛt bɔku vaytamɛn A (karɔt, swit pata, spinach, milk).
- Chenj we yu de si: If yu si ɛni chenj na yu yay, lɛk we yu yay dray, tɛl yu dɔktɔ wantɛm wantɛm, bikɔs dis kin bi sayn fɔ se yu nɔ gɛt bɛtɛ vaytamɛn A.
- Chek-ap ɔltɛm: Yu dɔktɔ go chɛk yu ɔltɛm fɔ si if yu sik de bɛtɛ ɔ nɔ de bɛtɛ. Mek shɔ se yu de atɛnd dɛn chɛk-ap dɛn ya ɔltɛm.
Sayd ɛfɛkt dɛn we kin apin bikɔs ɔf dis mɛrɛsin
Lɛk ɛni mɛrɛsin, Patisiran kin mek sɔm sayd ɛfɛkt dɛn. Pan ɔl we nɔto ɔlman kin gɛt dɛn, sɔm kin siriɔs ɛn sɔm kin kɔmɔn.
| Posisibul sayd effekt dɛm fɔ Patisiran | |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Alɛji Riakshɔn dɛn | Skin rash, it, swel na di fes, lip, tong ɔ trot. |
| Riakshɔn dɛn we pɔsin kin du wit di infushɔn | Chɛst pen, at fɔ blo, fɔdɔm, diziz. |
| Di sayn dɛn we de sho se pɔsin nɔ gɛt bɛtɛ vaytamɛn A | Chenj na di vishɔn, dray yay, dray skin, infekshɔn ɔltɛm. |
| Kɔmɔn sayd ɛfɛkt dɛm wae dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu ɔr de mɔna yu | |
| Jɛnɛral inkɔnvinɛns dɛn | Jɔyn pen, mɔsul dɛn we de at, trot we de at, bɛlɛ nɔ de fil fayn. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu gɛt ɛni ɔda sayn we nɔ kɔmɔn, tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Patisiran na vaysin we de trit nyurolɔjik dizayd we wan patikyula jɛnɛtik kɔndishɔn we dɛn kɔl hATTR kin kɔz.
- Dɛn kin jɔs gi dis na ɔspitul ɔ klinik, ɔnda dɔktɔ in sɔpɔtishɔn.
- Yu fɔ no bɔt di infushɔn riakshɔn dɛn we kin apin we yu de tek di mɛrɛsin.
- Dis mɛrɛsin kin mek di bɔdi nɔ gɛt bɔku vaytamɛn A, so mek shɔ se yu tek di vaytamɛn A pil we yu dɔktɔ tɛl yu fɔ tek.
- Nɔr frayd fɔ tɔk to yu dɔktɔ bɔt ɛni ɔda kayn sik, sayd ɛfɛkt, ɔr prɔblɛm wae yu kin gɛt. Gud kɔmyunikeshɔn na di men tin fɔ mek di tritmɛnt go bifo.
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