Ɛnibɔdi na yu famili, ɔ pɔsin we yu sabi, we dɛn bɔn wit we i nɔ de si fayn? Sɔntɛnde, dis kin kam bikɔs ɔf sik dɛn we de kɔmɔt na di jɛnɛreshɔn we kin pas frɔm wan jɛnɛreshɔn to ɔda jɛnɛreshɔn. De to de, di vishɔn kin stɔp, ɛn leta i nɔ kin si am atɔl. So, tide wi go tɔk bɔt di laytst, mɔs advans tritmɛnt na mɛdikal sayɛns we de trit dis kayn yay sik we nɔ kin bɔku, we pɔsin kin gɛt frɔm in mama ɛn papa. I nem na Voretigene Neparvovec.
Fɔ tɔk am simpul wan, wetin na Voretigene Neparvovec?
Dis nɔto mɛrɛsin lɛk di pils, kapsul, ɔ ɔntmɛnt we wi kin yuz. Dɛn kɔl dis Jin Tɛrapi . Di brand nem fɔ dis na LUXTURNA .
Dɛn kin yuz dis tritmɛnt fɔ trit wan patikyula ɛritayt vishɔn impairment we kin afɛkt di retina na wi yay. sכm spεshal wan, i de trit wan prכblεm fכ si we de k כz fכ difεkt na di RPE65 jin na wi bכdi.
So, wetin na dis jin tɛrapi?
Imajin se wan big buk de we gɛt instrɔkshɔn dɛn bɔt aw ɔltin na wi bɔdi fɔ wok. Dis buk na wi jin . Sɔntɛnde, na wan pej na dis buk, dat na, insay wan jin, mistek, mistek kin de. di mistek we de na di jin we dεn kכl RPE65 na wan pan dεn tin dεm ya.
Dis tritmɛnt we dɛn kɔl Voretigene Neparvovec, de yuz wan vayrɔs we nɔ de du bad as pɔsin we de kɛr am fɔ put kɔrɛkt kɔpi fɔ di jin insay sɛl dɛn we gɛt di jin we nɔ fayn. I tan lɛk se yu chenj pej wit di rɔng instrɔkshɔn dɛn wit nyu pej wit di kɔrɛkt instrɔkshɔn dɛn. afta dis, di yay sεl dεm kin ebul fכ wok fayn bak, εn tru dis, di vishכn we dεn lכs kin kam bak to sכm mak כ ivin stכp fכ si mכr vishכn lכs.
Dis na rili big big lip fɔ go bifo pan mɛrɛsin sayɛns. Na di wangren big op fɔ se naw dɛn dɔn gɛt fayn tritmɛnt fɔ wan sik we nɔ bin de mɛn bifo.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu du dis tritmɛnt
Bikɔs dis na rili patikyula tritmɛnt, i impɔtant fɔ mek yu dɔktɔ no bɔt yu kɔmplit wɛlbɔdi istri. Mek shɔ se yu tɛl am bɔt dɛn tin ya:
- Ɔda ay sik dɛm: Ɛni ɔda yay sik ɔr prɔblɛm wit yu yay we yu dɔn gɛt (e.g. katarakt, glaukoma).
- Alɛji: Duya tɛl wi if yu gɛt ɛni alɛji to dis mɛrɛsin (voretigene neparvovec), ɛni ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek yu nɔ pwɛl.
- Bεlε εn we dεn de gi pikin bεlε:If yu gɛt bɛlɛ, yu de tray fɔ gɛt bɛlɛ, ɔ yu de gi pikin in bɛlɛ, mek shɔ se yu tɛl yu dɔktɔ.
Aw yu kin yuz dis mɛrɛsin?
Dis nɔto mɛrɛsin we dɛn kin yuz na os. Dis na injɛkshɔn we dɛn kin put insay di yay . Na wan spɛshal dɔktɔ we tren fɔ du ay ɔpreshɔn kin du dis na say we dɛn rili kɔntrol ɛn klin, lɛk ɔspitul ɔpreshɔn rum. So natin nɔ de fɔ wɔri bɔt, dɛn de mek shɔ se yu sef to di ful mak.
Yu tink se dɛn kin gi dis to smɔl pikin dɛn?
Yɛs. Dɛn kin gi dis tritmɛnt to pikin dɛn we yɔŋ lɛk wan ia, ɔnda di rayt tin. Bɔt na di dɔktɔ we de mɛn pikin dɛn ɛn di dɔktɔ we de mɛn yu yay we de chɛk yu pikin kin disayd fɔ du di las tin bɔt am. If yu de gi dis tritmɛnt to pikin, i rili impɔtant fɔ tɔk to di mɛdikal tim bɔt am gud gud wan ɛn ɛksplen ɔltin.
Wetin kin apin if yu tek bɔku mɛrɛsin?
Bikɔs dɛn kin gi dis na ɔspitul, ɔnda di ful sɔpɔtishɔn fɔ dɔktɔ dɛn, di chans fɔ mek ‘ɔvados’ apin rili smɔl. Bɔt if ɛnibɔdi de tink se dis kayn tin dɔn apin, di wan dɛn we de wok na di ɔspitul go tek akshɔn wantɛm wantɛm. Nɔmal wan, if dis kayn tin apin , dɛn kin tɛl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital ɔ di Imejɛnsi Tritmɛnt Yunit (ETU) we de nia de.
Tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt ɛn afta yu dɔn gɛt am
We dɛn de du tritmɛnt ɛn afta dɛn dɔn trit yu, dɔktɔ dɛn go de wach yu gud gud wan. Yu gɛt big wok bak.
If yu notis ɛni chenj na yu yay - lɛk we yu nɔ de si fayn, yu nɔ de si fayn, blak spat dɛn we de flɔt bifo yu yay, yu de fil mɔ bɔt layt, ɔ yu yay de pen ɔ rɛd - tɛl yu dɔktɔ wantɛm wantɛm . Dis rili impɔtant.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Jɔs lɛk ɛni ɔda tritmɛnt, sɔm bad bad tin dɛn de we kin apin. Yu fɔ no mɔ bɔt dɛn tin ya we de kam biɛn.
| Sayd ɛfɛkt dɛn we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
|---|---|
| Sayd ɛfɛkt we pɔsin kin gɛt | Tɔk bɔt |
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di bɔdi, mɔ di fes, lip ɔ tong. |
| Blɔd we de kɔmɔt na di yay | Blɔd we de kɔmɔt insay ɔ na do na di yay. |
| Vishɔn kin chenj | Blɔr vishɔn, si blak dɔt ɔ nɛt we de flɔt bifo di yay, si layt we de flash. |
| Ay pen | Ay pen we nɔ de dɔn ɔ we kin rili bad. |
| Di prɛshɔn na di yay we de go ɔp | Fɔ fil se yu de prɛs insay yu yay. Na di dɔktɔ go chɛk dis. |
| Katarakt we pɔsin kin gɛt | Blɔr vishɔn afta tritmɛnt. |
Dis list nɔ kin gɛt ɔl di sayd ɛfɛkt dɛn. If yu gɛt ɛni sayn we nɔ kɔmɔn, tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Voretigene neparvovec (LUXTURNA) na wan spεsifi k jin tεrapi fכ wan hεridita ay sik we kכz fכ difεkt na di RPE65 jin.
- Na wan spɛshal dɔktɔ we de mɛn di yay kin du dis tritmɛnt na ɔspitul, ɛn i kin put injɛkshɔn na di yay .
- Bifo yu gɛt tritmɛnt, gi di dɔktɔ kɔmplit diskripshɔn bɔt ɔl yu mɛrɛsin, alɛji, ɛn if yu gɛt bɛlɛ ɔ yu nɔ gɛt bɛlɛ.
- Afta yu dɔn gɛt tritmɛnt, if yu si ɛni chenj na yu yay, yu yay de pen, ɔ yu de rɛd, tɛl yu dɔktɔ wantɛm wantɛm .
- Dis nɔto tritmɛnt fɔ ɔlman. Dɛn go no if dis tritmɛnt fayn fɔ yu ɔ nɔ rayt fɔ yu, dɛn go no afta dɛn dɔn du di dɔktɔ gud gud wan.
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