Avalglucosidase Alfa (Nexviazyme) - Ɔltin bɔt dis mɛrɛsin fɔ Pompe sik insay simpul wɔd dɛn

Yu dɔktɔ dɔn tɛl yu ɔ sɔmbɔdi na yu famili gɛt wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl Pompe sik? If na so, wi go tɔk bɔt wan mɛrɛsin fɔ am tide. Di nem fɔ dis mɛrɛsin na Avalglucosidase Alfa. Yu kin no am wit di brand nem Nexviazyme. Dis nem kɔmplikt smɔl, so yu kin gɛt bɔku kwɛstyɔn bɔt am. Nɔ wɔri, wi go tɔk bɔt ɔl dis insay wan rili simpul we we yu go ɔndastand.

Fɔ tɔk am simpul wan, us kayn mɛrɛsin dis?

Imajin se wi bɔdi tan lɛk big faktri. Fɔ mek ɔltin wok fayn na dis faktri, wokman dɛn fɔ de we de du difrɛn wok dɛn. Wi kin kɔl dɛn wokman dɛn ya na wi bɔdi ɛnzaym dɛn .

Dɛn kin bɔn pipul dɛm wae gɛt Pompe sik wit wan patikyula ɛnzaym wae nɔr de. dis εnzym in wok na fכ brok dכn εn kכntrכl di shuga we dεn kכl glycogen insay wi mכsul dεm εn sεl dεm. we dis εnzym nכ de, di shuga we dεn kכl glycogen de bigin fכ bכku na wi mכsul dεm. I tan lɛk dɔti we de na faktri. We dis kin bɔku, di mɔsul dɛn kin wik, i nɔ kin izi fɔ dɛn fɔ blo, ɛn di at kin afɛkt.

So, wetin dis dכg we dεn kכl Avalglucosidase Alfa de du na fכ riples di fכnshכn fכ da εnzym we nכ de, we dεn rεdכks. Dat min se, i tan lɛk fɔ briŋ pɔsin we kɔmɔt na do fɔ du di sem wok instead fɔ di wokman we dɛn dɔn ridyus. we dis dכg de kכmכt na di bכdi tru wan vein, i de bigin fכ brok da glycogen we dεn gεt εn pul am. Dɔn de sik kin stɔp smɔl smɔl, ɛn yu kin bigin fɔ fil fri.

Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin

Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ mek yu dɔktɔ no bɔt yu kɔmplit wɛlbɔdi kɔndishɔn. Dis na fɔ mek dɛn go ebul fɔ trit yu fayn fayn wan. Mek shɔ se yu tɛl dɛn bɔt dɛn tin ya mɔ.

• If yu gɛt at sik .
• If yu gɛt wan sik we de na yu lɔng .
• If yu bin dɔn gɛt alɛji bifo dis Avalglucosidase Alfa mɛrɛsin, ɛni ɔda mɛrɛsin, it, day, ɔ prɛzɛvɛtiv.
• If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ.
• If yu na mama we de gi pikin in bɛlɛ.

Aw fɔ yuz di mɛrɛsin?

Dis nɔto mɛrɛsin we yu kin yuz na os. Dɛn kin gi am ɔnda dɔktɔ in sɔpɔtishɔn na ɔspitul ɔ klinik.

• Wan mɛrɛsin we dɛn kin gi tru wan vein:Dɛn kin gi dis mɛrɛsin insay wan vein, lɛk salin. Wi kin kɔl dis prɔses infushɔn .
• Na wan mɛdikal tim de gi yu: Na dɔktɔ ɔ nɔs we gɛt trenin de gi yu dis mɛrɛsin, so natin nɔ de fɔ wɔri bɔt.

Yu tink se dɛn kin gi dis mɛrɛsin to smɔl pikin dɛn?

Yɛs, sɔm tɛm dɛn de, dɛn kin gi dis mɛrɛsin to pikin dɛn we yɔŋ lɛk wan ia. Bɔt dɛn kin du am ɔnda spɛshal dɔktɔ advays ɛn fɔ tek tɛm wit am. If yu de gi dis mɛrɛsin to yu pikin, tɔk to yu mɛdikal tim fayn fayn wan ɛn ɛksplen ɔltin.

Wetin yu kin du if di doz go ɔp?

Bikɔs dis na mɛrɛsin we dɛn kin gi na ɔspitul, di chans fɔ mek pɔsin tek am pasmak nɔ kin bɔku. Bɔt if yu tink se sɔntɛm yu dɔn tek am pasmak, nɔ panik. Tu tin de we yu fɔ du wantɛm wantɛm.

1. Go na di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm.

2. Ɔda we de fɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital .

Dis na tin we rili impɔtant, so i impɔtant fɔ du sɔntin kwik kwik wan.

Wetin a go du if a mis wan doz fɔ mɛrɛsin?

Fɔ tek dis mɛrɛsin di rayt tɛm ɛn di de we dɛn tɛl yu fɔ tek, i impɔtant fɔ mek di tritmɛnt go bifo. If yu nɔ ebul fɔ go na ɔspitul di de we dɛn tɛl yu fɔ go, nɔ mis am. Kɔl yu mɛdikal tim wantɛm wantɛm ɛn mek dɛn no. Dɛn go tɛl yu wetin fɔ du nɛks.

Speshal pɔynt dɛn we yu fɔ no bɔt

• Mɛdikal chɛk-ap: Nɔ mis fɔ chɛk-ap ɔltɛm na di klinik dɛn. Tɔk to yu dɔktɔ bɔt if yu sik de go bifo, de wɔs, ɔr if yu gɛt ɛni nyu prɔblɛm.
• Alɛji: Sɔm pipul dɛn kin gɛt siriɔs alɛji fɔ dis mɛrɛsin ɔ jɔs afta dɛn gi dɛn am. Fɔ ridyus dis risk, yu wɛlbɔdi tim kin gi yu ɔda mɛrɛsin (lɛk piritan) bifo yu bigin fɔ tek am. So fala dɛn instrɔkshɔn dɛn di rayt we.

Wetin na di sayd ɛfɛkt dɛm we dis mɛrɛsin kin gɛt?

Lɛk ɛni mɛrɛsin, dis kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt. Bɔt nɔto ɔlman kin gɛt dɛn. Di impɔtant tin na fɔ no wetin na dɛn sayd ɛfɛkt dɛn de ɛn wetin fɔ du if dɛn apin.

Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?

Frɔm di infɔmeshɔn we de naw, dɛn nɔ dɔn ripɔt se dis mɛrɛsin kin mek big prɔblɛm wit ɔda mɛrɛsin dɛn. Bɔt gi yu dɔktɔ wan kɔmplit list fɔ ɔl di mɛrɛsin dɛn we yu de tek (inklud vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn). Dɔn bak, tɛl yu dɔktɔ if yu de smok ɔ drink rɔm. Dis kin ɛp fɔ mek wi nɔ gɛt prɔblɛm dɛn we nɔ impɔtant.