Tide wi go tɔk bɔt wan sɔm kayn kɔmpleks, bɔt stil rili mɔdan mɛrɛsin we bɔku pipul dɛn nɔ yɛri bɔt. I nem na Ɛlivaldojɛn Ɔtotemɛl. Dɛn de sɛl am ɔnda di nem SKYSONA. Dis nɔto rɔm pil ɔ kapsul. Dis na spɛshal tritmɛnt fɔ wan rili rare ɛn siriɔs nyurolɔjik kɔndishɔn we dɛn kɔl sɛribra adrenoleukodystrophy (CALD). Lɛ wi ɛksplen dis tritmɛnt insay wan simpul we we yu go ɔndastand.
Wetin kin rili apin wit dis mɛrɛsin?
Fɔ ɔndastand dis, lɛ wi tek wan smɔl ɛgzampul. Imajin se di nɛv sɛl dɛn we de na wi bren ɛn spɛshal kɔd tan lɛk ilɛktrik waya. Dɛn ilɛktrik waya dɛn ya gɛt plastic sheath (insulation) rawnd dɛn, we de ɛp di ilɛktrishɔn fɔ travul fayn fayn wan ɛn nɔ lik. semweso, wi nεv sεl dεm dεn gεt wan protεktiv sεl dεm bak we dεn kכl ‘myelin’ rawnd dεm. Dis sεf na in de mek di nεv mεsej dεm fכ travul kwik εn kכrekt wan.
insay wan sik we dεn kכl sεribral adrenoleukodystrophy (CALD), wan jεnεtik difεkt de mek di bכdi nכ de prodyuz wan protin we i nid fכ mεnten dis ‘myelin’ sheath. afta dat dis protεktiv sεt de pwεl sכmtεm, we de mek di nεv sistεm nכ de wok fayn.
Fɔ tɔk am simpul wan, dis tritmɛnt we dɛn kɔl Elivaldogene Autotemcel, na fɔ tek sɛl dɛn frɔm di pɔsin in yon bɔdi, chenj dɛn jɛnɛtiks na lab, ɛn gi dɛn di pawa fɔ mek di prɔtin we nɔ de. Dɔn dɛn kin put di sɛl dɛn we dɛn dɔn chenj bak insay di pɔsin in bɔdi. Dɛn kin kɔl dis bak jin tɛrapi . Dis kin ɛp fɔ kɔntrol aw di sik dɛn kin wɔs.
Tin dɛm wae yu dɔktɔ fɔ no bifo yu bigin dis tritmɛnt
Bikɔs dis na tritmɛnt we rili kɔmpleks, i impɔtant fɔ mek yu mɛdikal tim no gud gud wan bɔt yu wɛlbɔdi prɔblɛm. Bifo yu bigin fɔ trit yu, yu fɔ rili tɛl yu dɔktɔ if yu gɛt ɛni wan pan dɛn sik ya:
- If yu gɛt ɛni kayn infekshɔn naw (lɛk fiva, kol, kɔf).
- If yu gɛt alɛji to dis mɛrɛsin (elivaldogene autotemcel), ɔda mɛrɛsin, it, day, ɔ tin dɛn we de mek yu nɔ pwɛl.
- If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ .
- If yu de gi yu pikin in bɛlɛ .
Aw dɛn kin gi di tritmɛnt?
Dis nɔto mɛrɛsin we dɛn kin yuz na os. Dɛn kin gi dis tritmɛnt na ɔspitul ɔ spɛshal klinik bay wan mɛdikal tim we dɛn dɔn tren.
Dɛn kin injɛkt dis mɛrɛsin insay di bɔdi lɛk salin tru wan vein. Dɛn kin du ɔl di wok ɔnda di klos we dɔktɔ ɛn nɔs dɛn de wach dɛn.
Bifo yu tritmɛnt, dɛn go gi yu wan spɛshal infɔmeshɔn liflet we dɛn kɔl MedGuide . I gɛt bɔku impɔtant tin dɛn bɔt dis mɛrɛsin, di we aw dɛn kin du am ɛn di prɔblɛm dɛn we kin apin to am. I rili impɔtant fɔ tek tɛm rid ɛn ɔndastand am.
Dɛn kin gi dis tritmɛnt bak to pikin dɛn we dɔn pas 4 ia, bɔt dɛn kin tink bɔt spɛshal tin dɛn fɔ tek tɛm wit ɛn di tin dɛn we dɛn fɔ du.
Wetin yu go du if yu tek bɔku mɛrɛsin?
Bikɔs dɛn kin gi dis ɔnda dɔktɔ in sɔpɔtishɔn na ɔspitul, di chans fɔ mek dis apin rili smɔl. Bɔt if ɛnibɔdi de we dɛn tink se dis dɔn apin, dɛn fɔ tɛl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital ɔ di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm.
Tin dɛn we yu fɔ tink bɔt we yu de du tritmɛnt ɛn afta yu dɔn gɛt am
Afta yu dɔn gɛt dis tritmɛnt, dɔktɔ dɛn go de wach yu wɛlbɔdi ɔltɛm. Fɔ dis, yu go nid fɔ tek kia spɛshal wan pan sɔm tin dɛn.
- Blɔd wok: Afta yu dɔn trit yu, yu go nid fɔ mek dɛn tɛst yu blɔd ɔltɛm. Dis go chɛk if di tritmɛnt de wok, if di nyu sɛl dɛn de wok fayn, ɛn if ɛni sayd ɛfɛkt de.
- Risk fɔ gɛt infɛkshɔn: Dis tritmɛnt kin mek yu imyun sistɛm wik fɔ sɔm tɛm, we kin mek yu gɛt mɔ infekshɔn. If yu gɛt sɔm sayn dɛn lɛk fiva, kol, kɔf, ɔ trot we de at , nɔ fɔ mɛn yusɛf. Kɔl yu wɛlbɔdi tim wantɛm wantɛm . Dɔn bak, tray fɔ de fa frɔm pipul dɛn we sik as yu ebul.
- Fɔ gi blɔd: Yu nɔ go ebul fɔ gi blɔd afta yu dɔn gɛt dis tritmɛnt.
- Risk fɔ gɛt kansa: Wit di mɔdan jin tritmɛnt dɛm lɛk dis, na smɔl risk fɔ gɛt sɔm kayn blɔd kansa. Nɔr frayd fɔ dis, bɔt tɔk bɔt dis risk ɛn aw dɛn go de wach am wit yu dɔktɔ.
- Speshal advays fɔ man dɛn: If yu na man we de du dis tritmɛnt, yu fɔ yuz kɔndɔm we yu de du mami ɛn dadi biznɛs wit uman we ebul fɔ bɔn pikin. Dis mεtכd fכ protεkt fכ fala fכ 6 mכnt afta tritmεnt. If yu tink se yu patna gɛt bɛlɛ dis tɛm, tɛl yu dɔktɔ wantɛm wantɛm.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, dis tritmɛnt kin mek pɔsin gɛt sayd ɛfɛkt. Sɔm pan dɛn nid fɔ go to dɔktɔ wantɛm wantɛm, ɛn ɔda wan dɛn kin bi nɔmal tin.
| Sayd ɛfɛkt we pɔsin kin gɛt | Diskripshɔn / Simptom dɛn |
|---|---|
| Siriɔs sayd ɛfɛkt dɛm we dɛn fɔ ripɔt to di dɔktɔ wantɛm wantɛm | |
| Alɛji we pɔsin kin gɛt | Skin rash, it, swel na di fes, lip, tong ɔ trot. |
| Blɔd we de kɔmɔt | Blɔd na di stɔl ɔ blak stɔl, vɔmit we tan lɛk kɔfi grɔn, urine we rɛd ɔ dak brawn, smɔl smɔl rɛd/pɔpul spat dɛn na di skin, ɛn layt brus. |
| Sik we de prɛd | Fiva, kol, kɔf, trot we de at. |
| Di sayn dɛm fɔ epilepsy (Seizures) . | Fɔ gɛt kɔndishɔn we tan lɛk fit ( seizure ). |
| Sayd ɛfɛkt dɛm wae nɔr kin denja, bɔt dɛn fɔ ripɔt to di dɔktɔ if dɛn kɔntinyu fɔ de | |
| Prɔblɛm dɛn we de na di dijestiv sistɛm | Kɔnstipɛshɔn, bɛlɛ pen, dayarɛa, vɔmit, nɔs. |
| Ɔda smɔl smɔl sik dɛn | Nɔr kin lɛk fɔ it, yu ed kin at, yu mɔt ɔ yu trot kin gɛt pen ɛn yu kin fil pen. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. Apat frɔm dat, if yu gɛt ɛnitin we nɔ kɔmɔn, tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Elivaldogene Autotemcel (SKYSONA) na wan hεli spεsifi k jin tεrapi fכ di rare sik Sεribral Adrenoleukodystrophy (CALD).
- Dɛn kin gi dis tritmɛnt na ɔspitul we wan tim we gɛt spɛshal dɔktɔ dɛn de kia fɔ.
- Bifo yu trit yu, mek shɔ se yu tɛl yu dɔktɔ ɔl yu wɛlbɔdi infɔmeshɔn (especially infection, allergy).
- Tek tɛm bad bad wan bɔt di sayn dɛm we de sho se yu gɛt infekshɔn ɛn blɔd afta yu dɔn trit yu. If yu gɛt ɛnitin we de mɔna yu, tɛl yu dɔktɔ wantɛm wantɛm.
- Man dɛm we de gɛt tritmɛnt fɔ yuz kɔndɔm we dɛn de du mami ɛn dadi biznɛs fɔ di wan ol tɛm we di tritmɛnt de.
- Nɔr frayd fɔ tɔk to yu dɔktɔ bɔt ɛni kwɛstyɔn ɔr tin wae de mɔna yu.
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