Na tεm fכ gi yu pikin di mεdisin (Elosulfase alfa)? Lɛ wi tɔk bɔt (Mucopolysaccharidosis tayp IVA - Morquio A sindrom)!

Yu kin dɔn yɛri bɔt dis mɛrɛsin we dɛn kɔl `(Elosulfase alfa)` afta di dɔktɔ tɛl yu se yu pikin gɛt wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl `(Mucopolysaccharidosis type IVA)` ɔ `(Morquio A syndrome)`. Na dis kayn tɛm, i nɔmal fɔ mek bɔku tin kam na wi maynd ɛn bɔku kwɛstyɔn dɛn fɔ kam. So, tide wi go tok abaut dis medisin, dis kondishon fo likl mo ditel, fo we we yu go andastan, okay?

Wetin na dis mɛrɛsin? Mek wi lan bɔt `(Elosulfase alfa)`?

Fɔ tɔk am simpul wan, `(Elosulfase alfa)` na ɛnzaym riplesmɛnt tɛrapi . Yu kin de wɔnda, "Wetin na ` ɛnzaym` ?" Tink bɔt dis we: wi bɔdi tan lɛk big faktri. Smɔl wokman dɛn de na dis faktri fɔ mek ɛni pat pan di wok go fayn ɛn fɔ mek i go bifo. Na dat na di ɛnzaym dɛn. dis εnzym dεm implεnt fכ plεnti imכtant kεmikכl prכsεs dεm we de apin insay wi bכdi.

naw, insay di kes fכ `(Mucopolysaccharidosis type IVA)` כ `(Morquio A syndrome)`, wetin de apin na dat wan spεshal εnzym we wi bכdi nid de nכ de כ nכ de wok fayn. we dis εnzym nכ de, sכm tin dεm na di bכdi kin bigin fכ kכmכt insted fכ brok dכn fayn fayn wan. Dis na wetin kin mek difrɛn prɔblɛm dɛn de na di bon dɛn, di katilej, di yay, ɛn di we aw dɛn de blo.

so, dεn de yuz dis mεdisin we dεn kכl `(Elosulfase alfa)` fכ gi di εnzym we nכ de na do. Dis tan lɛk fɔ tek ɔda pɔsin fɔ tek di wokman we dɔn mis na faktri in ples. Dis nɔ kin ebul fɔ mɛn di sik ɔltogɛda. Bɔt, e kin ɛp fɔ kɔntrol de sik ɛn mek layf izi smɔl. Mɔs tɛm, yu go fɛn dis mɛrɛsin ɔnda di brand nem `(Vimizim)`.

Wetin na di tin dɛm we yu nid fɔ tɛl di dɔktɔ?

Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ tɛl yu wɛlbɔdi tim (i.e. dɔktɔ, nɔs ) ɔl wetin yu nid fɔ no bɔt yu ɛn yu pikin in wɛlbɔdi . Mek shɔ se yu tɛl dɛn bɔt dɛn tin ya mɔ:

• If yu gɛt fiva ɔ ɛni infekshɔn naw .
• If yu gɛt slip apnea , sɔm pipul dɛn kin stɔp fɔ blo fɔ sɔm tɛm we dɛn de slip ɛn dɛn kin bigin fɔ blo bak. Dat na wan kɔndishɔn.
• If yu dɔn gɛt alɛji to di mɛrɛsin `(Elosulfase alfa)` bifo, to ɛni ɔda mɛrɛsin, to wan kayn it, sɔmtɛm to day, to prɛzɛvɛtiv, ɛn ɔda tin dɛn Tɛl wi, ivin if na smɔl tin.
• If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ.
• If yu na mama we de gi pikin in bɛlɛ.

Dis infɔmeshɔn kin rili ɛp di dɔktɔ ɔ nɔs fɔ disayd bifo i bigin fɔ tek mɛrɛsin.

Aw yu kin yuz dis mɛrɛsin?

dis mεdisin `(Elosulfase alfa)` dεn kin gi am as `infushכn` insay wan vein. Dat min se dɛn kin gi am as salin sɔlvushɔn, di mɛrɛsin kin absɔb smɔl smɔl insay di bɔdi. Dis nɔto sɔntin we pɔsin kin du na os. Dɛn kin du dis tritmɛnt na ɔspitul ɔ klinik, ɔnda di sɔpɔtishɔn fɔ wan tren mɛdikal pɔshɔnal (dɔktɔ ɔ nɔs).

Tɔk to yu dɔktɔ we de mɛn pikin dɛn bɔt aw fɔ gi pikin dɛn dis mɛrɛsin. Insay sɔm kes dɛm we dɛn kin pik, dɛn kin gi dis mɛrɛsin to pikin dɛm we ol lɛk 5 ia, bɔt sɔm tin dɛn de fɔ tek tɛm wit.

Impɔtant: If ɛnibɔdi tink se i dɔn tek dis mɛrɛsin tumɔs (ɔvados), i fɔ kɔl di imejensi rum we de nia am ɔ di pɔyzin kɔntrol sɛnta wantɛm wantɛm.

Wan ɔda tin, na fɔ yu nɔmɔ dɛn kin gi dis mɛrɛsin. Nɔ sheb am wit ɛni ɔda pɔsin fɔ ɛni rizin . Ɔlman in sityueshɔn difrɛn, so na di pɔsin nɔmɔ we gi am di mɛrɛsin fɔ yuz am.

Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?

I rili impɔtant fɔ tek yu mɛrɛsin di rayt tɛm ɛn di de we yu go apɔntin, bikɔs dis na tritmɛnt fɔ lɔng tɛm. If yu nɔ ebul fɔ kip yu apɔntinmɛnt we yu dɔn sɛtul, kɔl yu dɔktɔ ɔ wɛlbɔdi pɔsin wantɛm wantɛm ɛn mek dɛn no. Dɛn go tɛl yu wetin fɔ du nɛks.

Prɔblɛm kin de wit ɔda mɛrɛsin dɛn?

Nɔr bɔrku stɔdi nɔr dɔn de bɔt aw dis mɛrɛsin (Elosulfase alfa) de miks wit ɔda mɛrɛsin dɛm. Dis min se i kin intarakt wit ɔda mɛrɛsin dɛn we yu de tek.

So, mek wan list fɔ ɔl di mɛrɛsin dɛn we yu de tek (we dɛn gi yu, we yu de it, we yu de it, ɛbul, vaytamɛn, it we yu de it, ɛn ɔda tin dɛn) ɛn gi am to yu dɔktɔ. Dɔn bak, mek shɔ se yu tɛl yu dɔktɔ if yu de smok, drink rɔm, ɔ yuz ɔda drɔgs we nɔ rayt. Sɔm tin kin miks wit dis mɛrɛsin, we min se dɛn kin afɛkt dɛnsɛf.

Wetin na de tin wae yu fɔ tek tɛm wit we yu de tek dis mɛrɛsin?

We dɛn gi sɔm pipul dɛn dis mɛrɛsin, dɛn kin gɛt siriɔs alɛji.Dis kin apin. Dis na sɔntin we wi fɔ wach bɔt. Fɔ ridyus dis risk, dɛn kin aks yu fɔ tek ɔda mɛrɛsin (lɛk antihistamine) bifo dɛn gi yu di mɛrɛsin. I impɔtant fɔ tek di mɛrɛsin jɔs lɛk aw yu dɔktɔ tɛl yu.

Ɔl di tɛm we dɛn de gi yu dis mɛrɛsin, di wan dɛn we de wok fɔ di wɛlbɔdi biznɛs go de wach yu sik gud gud wan. So natin nɔ de fɔ wɔri bɔt. Dɛn go tek kia ɔf yu.

Us sayd ɛfɛkt dɛn kin apin?

Lɛk ɛni mɛrɛsin, `(Elosulfase alfa)` kin mek sɔm sayd ɛfɛkt. Bɔt, nɔto ɔlman kin gɛt dɛn. Sɔm dɛn siriɔs, ɛn ɔda wan dɛn nɔto big tin.

Sayd ɛfɛkt dɛn we yu fɔ tɛl yu dɔktɔ bɔt wantɛm wantɛm

If yu gɛt ɛni wan pan dɛn sik ya, yu fɔ tɛl yu dɔktɔ ɔ pɔsin we de kia fɔ yu wɛlbɔdi biznɛs kwik kwik wan:

• Di sayn dɛm wae de sho se yu gɛt alɛji: yu skin de rɔsh, yu gɛt ayv, yu de it, ɔr yu fes, yu lip, ɔr yu tɔng de swel.
• I nɔ izi fɔ yu fɔ blo: Fɔ fil lɛk se yu gɛt prɔblɛm fɔ blo, fɔ fil lɛk se yu de swɛt.
• Chɛst pen ɔ tayt: Na filin fɔ tayt na di chɛst, pen we de kɔmɔt insay di chɛst.
• Kɔf: If yu gɛt kɔf we nɔ kɔmɔn.
• Lɔw blɔd prɛshɔn: Yu kin fil lɛk yu ed de tɔn ɛn yu yay kin tɔn blu.

If yu si somtin laik dis, no delay, okay?

Sayd ɛfɛkt dɛn we nɔ kin siriɔs, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de

Bɔku tɛm, dɛn tin ya nɔ kin rili siriɔs, bɔt if dɛn kɔntinyu fɔ de, ɛn if dɛn de mɔna yu, i go fayn fɔ tɛl yu dɔktɔ se:

• Kɔl: Yu kin fil kol ɔ shek shek we dɛn gi yu di mɛrɛsin ɔ jɔs afta dɛn gi yu am.
• Fiva: Di bɔdi kin wam ɛn fiva.
• Hɛdrɛst (`hisaradaya`): Lɛk nɔmal edrɛst .
• Nɔs, vɔmit: Yu kin fil lɛk se yu bɛlɛ de tɔn ɔ yu kin fil lɛk se yu go vɔmit.
• Bɛlɛ pen: Na smɔl diskɔmfɔt ɔ pen na di bɛlɛ.
• Taya: Yu kin fil taya ɛn yu nɔ gɛt layf.

Impɔtant: Dis list nɔ gɛt ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu notis ɛni ɔda tin we nɔ kɔmɔn, tɔk to yu dɔktɔ bɔt am.

Usay yu kin kip di mɛrɛsin?

Dis nɔto sɔntin we yu fɔ wɔri bɔt. Bikɔs dɛn kin gi dis mɛrɛsin we dɛn kɔl `(Elosulfase alfa)` na ɔspitul ɔ klinik, yu nɔ nid fɔ kɛr am go na os ɛn kip am. So nɔ wɔri bɔt am.

Fɔ dɔn, di tin dɛn we impɔtant pas ɔl fɔ mɛmba (Take-Home Message) .

Okay, so, frɔm wetin wi dɔn tɔk bɔt, a tink se yu dɔn gɛt gud ɔndastandin bɔt di mɛrɛsin `(Elosulfase alfa)`. mεmba se, `(Mucopolysaccharidosis type IVA)` na komplεks kכndishכn, εn di tritmεnt we dεn gi fכ am spεshal bak.

• Dis mɛrɛsin nɔ de mɛn di sik, bɔt i de ɛp fɔ kɔntrol di sayn dɛm ɛn mek layf izi smɔl.
• Bifo yu bigin fɔ tek di mɛrɛsin, nɔ fɔgɛt fɔ gi yu dɔktɔ kɔmplit diskripshɔn bɔt yu wɛlbɔdi kɔndishɔn.
• Dɛn kin gi di mɛrɛsin na ɔspitul, as infushɔn.
• Yu fɔ no bɔt di bad tin dɛn we kin apin to yu, mɔ if yu gɛt alɛji, ɛn tɛl yu dɔktɔ wantɛm wantɛm.
• If yu gɛt ɛni kwɛstyɔn ɔ dawt, aks di dɔktɔ ɔ nɔs. Dɛn de de fɔ ɛp yu.

Fɔ liv wit dis sik kin tranga. Bɔt if yu gi yu di rayt advays, sɔpɔt yu, ɛn lɛk yu, yu go ebul fɔ du dis waka. Mɛmba se nɔto yu wangren de.

` elosulfase alfa, vimizim, mucopolysaccharidosis tayp IVA, MPS IVA, Morquio A sεndrכm, εnzym riplesmεnt, infushכn, sayd ifekt dεm