Yu dɔktɔ dɔn tɛl yu ɔ sɔmbɔdi na yu famili gɛt Pompe sik ɛn yu nid fɔ bigin tek wan vaysin we dɛn kɔl Avalglucosidase Alfa as tritmɛnt? Na nɔmal tin fɔ fil smɔl frayd ɛn fred we yu yɛri nem lɛk dis. Bɔt nɔ wɔri. Insay dis atikul, wi go tɔk bɔt wetin na dis mɛrɛsin, wetin i de du, ɛn wetin wi nid fɔ tek tɛm wit.
Wetin na dis mɛrɛsin rili? (Wetin na Avalglucosidase Alfa?)
Fɔ tɔk am simpul wan, Avalglucosidase Alfa na kɔpi we mɔtalman mek fɔ wan ɛnzaym we dɛn kin mek na wi bɔdi na wi bɔdi. Dɛn kin sɛl am ɔnda di nem Nexviazyme . I de pan wan klas we dɛn kɔl Enzyme Replacement Therapy .
Tink bɔt, Pompe sik na wan sik we de mek wan jenɛtik dɛfɛkt na wi bɔdi de ridyus ɔ pul wan patikyula ɛnzaym we de mek am kɔmɔt kpatakpata. We dis ɛnzaym nɔ de, wan kayn shuga we dɛn kɔl glycogen kin bigin fɔ gɛda insay wi sɛl dɛn, mɔ di mɔsul sɛl dɛn. Dis akumulεshכn de mek yu gεt sכmtin dεm lεk we di mכsul dεm wik εn i at fכ brith.
So wetin dis Avalglucosidase Alfa vaysin de du na fɔ gi di ɛnzaym we nɔ de to di bɔdi frɔm ɔdasay. I tan lɛk se yu de ful-ɔp tank wit wata we kɔmɔt na do. Bɔt dis nɔ kin ebul fɔ mɛn di sik kpatakpata. Bɔt dis tritmɛnt kin ɛp bɔrku fɔ kɔntrol di damej wae de sik kin kam wit ɛn fɔ ridyus di sayn dɛm ɛn fɔ mek layf izi.
Tin dɛn we yu fɔ tɛl yu dɔktɔ bifo yu tek mɛrɛsin
I rili impɔtant fɔ tɔk bɔt yu kɔmplit wɛlbɔdi histri wit yu dɔktɔ bifo yu bigin dis tritmɛnt. Yu fɔ tɔk mɔ bɔt ɛni wan pan dɛn tin ya:
| Wɛlbɔdi kɔndishɔn ɔ chans | Wetin mek yu fɔ tɛl pipul dɛn? |
|---|---|
| At sik ɔ at we nɔ de wok fayn | Bikɔs dis mɛrɛsin kin afɛkt di wata we de na di bɔdi, i impɔtant fɔ no bɔt di tin dɛn we de apin na di at. |
| Di sik we de na di lɔng | If risk de fɔ mek i nɔ ebul fɔ blo fayn, di mɛdikal tim fɔ tek tɛm mɔ bɔt am. |
| Alɛji to ɔda mɛrɛsin, it, ɔ tin dɛn | I impɔtant fɔ no if yu gɛt alɛji to Avalglucosidase Alfa ɔ ɛni wan pan di tin dɛn we de insay. |
| If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ | Yu fɔ tɔk bɔt aw dis mɛrɛsin sef we yu gɛt bɛlɛ wit yu dɔktɔ. |
| If dɛn de gi di pikin in mama in bɛlɛ | I impɔtant fɔ go to dɔktɔ fɔ advays if di mɛrɛsin de pas to di pikin tru in mama in milk. |
Aw dɛn kin gi dis mɛrɛsin?
Avalglucosidase Alfa nɔto mɛrɛsin we yu kin kɛr go na os. na injεkshכn we dεn de gi tru salin sכlushכn insay wan vein (intravenous infusion) . Dis min se yu go gɛt fɔ go na ɔspitul ɔ spɛshal klinik fɔ gɛt dis tritmɛnt. Na de, dɔktɔ ɔ nɔs we tren go gi yu di injɛkshɔn.
- Fɔ yɔŋ pikin dɛn: Sɔntɛnde dɛn kin gi dis tritmɛnt to pikin dɛn we dɔn pas wan ia. Bɔt na dɔktɔ we de mɛn pikin dɛn kin disayd fɔ du dis. Dɛn de fala spɛshal tin dɛn fɔ tek tɛm wit dis.
- Wetin a go du if a mis wan doz? I rili impɔtant fɔ tek dis mɛrɛsin jɔs di de we dɛn dɔn plan fɔ tek am. If yu mis wan de we yu dɔn sɛtul, kɔl yu dɔktɔ wantɛm wantɛm ɛn mek dɛn no so dat dɛn go ebul fɔ sɛtul ɔda apɔntinmɛnt.
- Wetin fɔ du if dɛn ad di doz? Bikɔs dɛn kin gi dis na ɔspitul, di chans fɔ mek dis apin rili smɔl. Bɔt if yu tink se yu dɔn tek di mɛrɛsin tumɔs, yu fɔ tɛl di dɔktɔ dɛn wantɛm wantɛm. Ɔda we de fɔ kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) .
Tin dɛn we yu fɔ tek tɛm wit we yu de tek di mɛrɛsin
Afta yu dɔn bigin fɔ trit yu, yu dɔktɔ go de chɛk yu ɔltɛm fɔ si aw yu de du. Mek shɔ se yu go fɔ dɛn chɛk-ap dɛn ya. If yu sik nɔr de bɛtɛ ɔr tan lɛk se yu de wɔs, tɛl yu dɔktɔ.
Impɔtant: Dis mɛrɛsin kin mek sɔm pipul dɛn gɛt siriɔs alɛji . Fɔ ridyus dis risk, yu dɔktɔ kin gi yu ɔda mɛrɛsin (lɛk mɛrɛsin we dɛn kɔl piritan) bifo i gi yu dis vaysin. So fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we.
Yu tink se i go miks wit ɔda mɛrɛsin dɛn?
Naw, no ripɔt nɔ de bɔt siriɔs intarakshɔn bitwin Avalglucosidase Alfa ɛn ɔda drɔgs. Bɔt mek shɔ se yu tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud di mɛrɛsin dɛn fɔ ɔda sik dɛn, vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn) . Tɛl yu dɔktɔ bak if yu de smok ɔ drink rɔm, bikɔs sɔm pan dɛn tin ya kin afɛkt yu tritmɛnt.
Wetin na di sayd ɛfɛkt dɛn we di mɛrɛsin kin gɛt?
Lɛk ɛni mɛrɛsin, dis wan kin gɛt sɔm bad bad tin dɛn. Bɔt nɔto ɔlman kin gɛt dɛn. Lɛ wi sheb dɛn tin ya to tu kategori.
| Sayd ɛfɛkt dɛn we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
|---|---|
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di fes, lip ɔ tong. |
| Trobul fɔ blo | Fɔ blo shɔt, fɔ blo kwik kwik wan. |
| Chɛst de pen | Fɔ fil se yu chɛst tayt ɔ kɔnstrikt. |
| Lɔw blɔd prɛshɔn | Diziz, blurred vision, fil lɛk yu kin fɔdɔm we yu tinap, taya pasmak. |
| Fɔ mek yu flash | Wantɛm we yu de rɛd ɛn fil lɛk se yu fes ɛn yu nɛk de wam. |
| Bɔku tɛm i nɔ kin siriɔs (bɔt tɛl yu dɔktɔ if i kɔntinyu fɔ de) . | |
| Ed de at | Kɔmɔn ed pen. |
| Vɔmit | Fɔ fil lɛk se yu de vɔmit. |
| Rɔnbɛlɛ | Fɔ mek yu bɔdi wam. |
| Mɔsul ɔ jɔyn pen | Pen na di mɔsul ɔ di jɔyn dɛn. |
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.
Mɛsej we dɛn kin kɛr go na os
- Avalglucosidase (Nexviazyme) na wan ɛnzaym riplesmɛnt tɛrapi we dɛn kin yuz fɔ trit Pompe sik. I nɔ de mɛn di sik, bɔt i de kɔntrol di sayn dɛm.
- Dɛn kin gi dis mɛrɛsin na ɔspitul as injɛkshɔn na wan vein.
- Bifo yu bigin fɔ trit yu, tɛl yu dɔktɔ bɔt ɔl yu mɛrɛsin ɛn ɔda mɛrɛsin dɛn we yu de tek.
- Yu fɔ no bɔt pɔsibul siriɔs alɛji we yu de tek di vaysin. If yu gɛt sɔm sayn dɛn lɛk fɔ mek yu nɔ ebul fɔ blo ɔ yu fes de swel, tɛl di mɛdikal tim wantɛm wantɛm.
- I rili impɔtant fɔ gɛt tritmɛnt di rayt tɛm. Nɔ skip tritmɛnt fɔ ɛni rizin. Tɔk to yu dɔktɔ if yu gɛt ɛnitin fɔ wɔri bɔt.
- Nɔ ɛva shem fɔ aks yu dɔktɔ bɔt ɛni kwɛstyɔn ɔ tin we de mɔna yu.
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