Fabry sik na wan rare, jεnεtik kכndyushכn we de apin bikoz fכ wan rili imכtant εnzym na wi bכdi we nכ de. Dis kin afɛkt difrɛn pat dɛn na di bɔdi lɛk di at, di kidni, ɛn di nervɔs sistɛm, as tɛm de go. So, if yu gɛt Fabry sik bak, yu dɔktɔ go dɔn gi yu wan mɛrɛsin we dɛn kɔl Agalsidase Beta. Tide, wi go tɔk bɔt dis mɛrɛsin simpul ɛn klia we.
Us kayn mɛrɛsin dis?
Fɔ tɔk am simpul wan, Agalsidase Beta (brand nem Fabrazyme) na tritmɛnt we de tek di ples fɔ di ɛnzaym we nɔ de na di bɔdi fɔ pɔsin we gɛt Fabry sik. We wi de tɔk bɔt mɛrɛsin, dɛn kɔl dis ‘Enzyme Replacement Therapy’ (ERT).
De tin wae impɔtant pas ɔl na dat dis nɔr de mɛn dis sik. Bɔt dis tritmɛnt kin rili ɛp fɔ kɔntrol di damej we di sik kin du to di bɔdi ɛn ridyus di sayn dɛm.
Di tin dɛn we impɔtant pas ɔl fɔ tɛl yu dɔktɔ
Bifo yu bigin dis tritmɛnt, i impɔtant fɔ mek di dɔktɔ no sɔm tin dɛn bɔt yu wɛlbɔdi prɔblɛm. So, if yu gɛt ɛni wan pan dɛn tin ya, mek shɔ se yu tɛl di dɔktɔ bɔt am.
- If yu gɛt at sik .
- If yu dɔn ɛva gɛt alɛji fɔ Agalsidase Beta, manitol, ɔ ɛni ɔda mɛrɛsin, it, ɔ day.
- If yu gɛt bɛlɛ , ɔ yu de ɛkspɛkt fɔ gɛt bɛlɛ jisnɔ.
- If yu na mama we de gi yu pikin in bɛlɛ .
Aw yu kin yuz dis mɛrɛsin?
Dɛn kin gi dis mɛrɛsin as infushɔn we dɛn kin put insay di bɛlɛ (infushɔn) insay wan vein. Dis nɔto sɔntin we yu go ebul fɔ du na os. Na pɔsin we tren fɔ kia fɔ wɛlbɔdi biznɛs nɔmɔ de gi dis tritmɛnt na ɔspitul ɔ klinik, ɔnda dɔktɔ in sɔpɔtishɔn.
Yuz fɔ yɔŋ pikin dɛn
Dɛn fɔ tek tɛm spɛshal we dɛn de gi dis mɛrɛsin to yɔŋ pikin dɛn. Sɔntɛnde dɛn kin gi am to pikin dɛn we yɔŋ lɛk 2 ia, bɔt na di dɔktɔ we de chɛk di pikin nɔmɔ kin disayd.
Wetin a go du if a tek bɔku mɛrɛsin?
Bikɔs dɛn kin gi dis mɛrɛsin na ɔspitul, ɔnda pɔsin we sabi du in wok, di chans fɔ mek pɔsin tek am pasmak kin rili smɔl. Bɔt if yu tink se sɔntin dɔn apin, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital wantɛm wantɛm , ɔ go na di Imejɛnsi Tritmɛnt Yunit (ETU) we de nia yu .
Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?
I rili impɔtant fɔ tek di mɛrɛsin di de we dɛn dɔn sɛtul ɛn di tɛm we dɛn dɔn sɛtul fɔ dis tritmɛnt. If fɔ sɔm rizin yu nɔ ebul fɔ kam na di ɔspitul di de we dɛn dɔn sɛtul, tɛl yu dɔktɔ ɔ klinik bifo tɛm ɛn arenj ɔda de.
Usay yu kin kip di mɛrɛsin?
Bikɔs dɛn kin gi dis mɛrɛsin na ɔspitul ɔ klinik, dɛn nɔ go alaw yu fɔ kɛr am go na os ɔ kip am.
Ɔda mɛrɛsin dɛm wae kin miks wit dis mɛrɛsin
Sɔm pan di mɛrɛsin dɛm wae yu de tek kin intarakt wit Agalsidase Beta. So, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (dɛn prɛskrib, ɔva-di-kɔnta, ɛbul prɔdak, vaytamɛn). Ɛspɛshali if yu de tek ɛni wan pan dɛn mɛrɛsin ya:
- amiodarɔn we gɛt di sik
- klorokin we dɛn kɔl klorokin
- jɛntamisin we dɛn kɔl
- Haydroksiklɔrokin we dɛn kɔl
- monobenzon we dɛn kɔl
Dis list nɔ gɛt ɔl di tin dɛn we pɔsin kin du wit di mɛrɛsin, so i go fayn fɔ mek yu tɛl yu dɔktɔ bɔt ɔltin we yu de tek.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, dis wan kin gɛt sɔm bad bad tin dɛn. Sɔm siriɔs, sɔm kɔmɔn. I impɔtant fɔ no bɔt dɛn tin ya.
| Sayd ɛfɛkt we pɔsin kin gɛt | Tɔk bɔt |
|---|---|
| Sayd ɛfɛkt dɛn we dɛn fɔ ripɔt to di dɔktɔ ɔ nɔs wantɛm wantɛm | |
| Sivɛri Alɛji Riakshɔn | Skin rash, it, swel na di fes, lip ɔ tong. |
| I nɔ kin izi fɔ yu fɔ blo | Fɔ blo shɔt, fɔ blo kwik kwik wan. |
| Chɛst de pen ɔ tayt | Fɔ fil lɛk se dɛn de swɛt yu at. |
| Di at we de blo | Fɔ fil lɛk se yu at de bit fast ɔ yu at de bit de chenj. |
| Ɔda | Diziz bad bad wan, yu an ɔ fut de swel, yu at pwɛl. |
| Sayd ɛfɛkt dɛm wae nɔr kin siriɔs (bɔt dɛn fɔ ripɔt to dɔktɔ if dɛn kɔntinyu fɔ de) . | |
| Wetin yu kin fil we yu injekt di mɛrɛsin | Fiva ɔ fil kol. |
| Jɛnɛral pen | Bɔdi de at, ed de at. |
| Prɔblɛm dɛn we de na di dijestiv sistɛm | Nɔs, vɔmit, bɛlɛ pen ɔ nɔ fil fayn. |
| Di we aw pɔsin de tink | Fɔ fil nɔ izi, fɔ wɔri. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu gɛt ɛni difrɛn tin, tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Agalsidase Beta (Fabrazyme) na wan ɛnzaym riplesmɛnt tɛrapi fɔ Fabry sik. Pan ɔl we i nɔ de mɛn di sik ɔltogɛda, i kin ɛp fɔ kɔntrol di sik ɛn di prɔblɛm dɛn we kin apin to am bad bad wan.
- Dɛn kin gi dis mɛrɛsin insay ɔspitul, so i rili impɔtant fɔ gɛt tritmɛnt di rayt tɛm.
- Yu fɔ tɛl yu dɔktɔ bɔt ɛni ɔda mɛrɛsin we yu de tek, ɛni alɛji we yu gɛt, ɛn if yu gɛt bɛlɛ ɔ yu de gi pikin bɔbi.
- If yu gɛt ɛni sayn lɛk fɔ mek yu nɔ ebul fɔ blo fayn, yu chɛst de pen, ɔ yu skin de rɔsh we yu de injɛkt di mɛrɛsin ɔ jɔs afta yu dɔn injɛkt di mɛrɛsin, tɛl yu dɔktɔ ɔ nɔs wantɛm wantɛm.
- If yu gɛt ɛni kwɛstyɔn bɔt dis mɛrɛsin, nɔ fred ɔ shem fɔ aks yu dɔktɔ.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt