Sɔntɛnde, we dɔktɔ gi wi wan mɛrɛsin we kɔmplikt smɔl we wi nɔ ivin yɛri bɔt, wi kin fred smɔl ɛn fred, nɔto so? Bɔrku kwɛstyɔn lɛk "Us mɛrɛsin na dis? Wetin go apin wit dis? I go gɛt sayd ɛfɛkt?" kam na yu maynd. Tide, wi go tɔk bɔt di Elapegademase vaysin, we bɔku pipul dɛn nɔ yɛri bɔt, bɔt na wan mɛrɛsin we rili impɔtant, insay wan simpul we we yu go ɔndastand.
Wetin na Ɛlapegademase?
Fɔ tɔk am simpul wan, Elapegademase na vaysin we de trit wan jɛnɛtik kɔndishɔn we nɔ kin apin so ɔltɛm. Dɛn kɔl dis sik Adenosine Deaminase (ADA Deficiency) . Di nem kɔmplikt smɔl, so lɛ wi luk am simpul wan.
Imajin se wi bɔdi na big faktri. Fɔ mek ɔltin wok fayn na dis faktri, difrɛn kayn wokman dɛn fɔ de. Enzym na di smɔl smɔl wok dɛn we de wok na wi bɔdi. Ɛni ɛnzaym gɛt wan patikyula wok.
Adenosine Deaminase na wan pan dɛn spɛshal ɛnzaym dɛn de. di wok we i de du na fכ brok wan kεmikכl we wi nכ want (deoxyadenosine) we de kכmכt na wi sεl dεm εn pul am kכmכt na di bכdi.
Naw, dɛn kin bɔn sɔm pipul dɛn wit dis ɛnzaym we dɛn kɔl adenosine deaminase, ɔ dɛn kin mek smɔl pan am. Na dat wi kin kɔl ADA dɛfisiɛns. We dis ɛnzaym nɔ de, da kemikal de we wi nɔ want kin bigin fɔ gɛda na di bɔdi. Dis tin kin rili pɔyzin di sɛl dɛn we de fɛt (limfosayt) na wi imyun sistɛm . Dis kin mek dɛn sɛl dɛn de pwɛl, ɛn di imyun sistɛm kin wik bad bad wan.
dis imyun sistεm we wik bad bad wan dεn kכl am Severe Combined Immunodeficiency (SCID) . Pɔsin we gɛt dis sik kin rili gɛt baktriyal infɛkshɔn.
So, wetin di Elapegademase vaksin de du na fכ gi di εnzym we nכ de we dεn kכl adenosine deaminase frכm כdasay na di bכdi. Dɛn kɔl dis Ɛnzaym Riplesmɛnt Tɛrapi . We dɛn gi dis vaysin, di pɔyzin tin dɛn we kin gɛda na di bɔdi kin brok, di damej pan di imyun sɛl dɛn kin stɔp, ɛn di imyun sistɛm kin bigin fɔ strɔng bak. Dis kin mek di bɔdi ebul fɔ fɛt infɛkshɔn.
Tin dɛm wae yu fɔ tɛl yu dɔktɔ bifo yu tek dis mɛrɛsin
Bifo yu bigin dis mɛrɛsin, i rili impɔtant fɔ gi yu dɔktɔ kɔmplit diskripshɔn bɔt yu wɛlbɔdi kɔndishɔn. Ɛspɛshali di tin dɛn we de kam biɛn ya, wi fɔ tɔk bɔt.
| Situeshɔn we yu nid fɔ ripɔt | Wetin mek dat impɔtant? |
|---|---|
| Di sik we yu de gɛt naw (lɛk fiva, kɔf, kol) . | I kin impɔtant fɔ kɔntrol di infɛkshɔn dɛn we dɔn de bifo yu bigin fɔ tek mɛrɛsin. |
| Di pletlɛt lɛvɛl dɛn we de go dɔŋ | Dis mɛrɛsin kin afɛkt di blɔd tɛst, so di dɔktɔ fɔ no bɔt ɛni sik we dɔn de. |
| Alɛji fɔ elapegamide ɔ ɔda mɛrɛsin, it, ɔ day | Dis impɔtant fɔ no di risk fɔ mek yu gɛt siriɔs alɛji to di mɛrɛsin. |
| If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ | Yu fɔ tɔk to yu dɔktɔ bɔt di tin dɛn we kin apin to di pikin we de na di bɛlɛ. |
| If dɛn de gi di pikin in mama in bɛlɛ | Yu dɔktɔ go advays yu if di mɛrɛsin pas to di pikin tru in mama in milk ɛn if i go gɛt ɛni ɛfɛkt. |
Aw yu kin yuz dis mɛrɛsin kɔrɛkt wan?
Dɛn kin gi dis mɛrɛsin as injɛkshɔn insay di mɔsul dɛn . Bɔku tɛm, na wan mɛdikal tim we de na ɔspitul ɔ klinik kin gi dis. Bɔt sɔm tɛm dɛn de, fɔ mek i izi fɔ di pɔsin, i pɔsibul bak fɔ gɛt dis injɛkshɔn na os.
If yu fɔ gɛt vaysin na os...
Nɔ wɔri. Di ɔspitul in tren nɔs staf go sho yu rili klia wan, stɛp bay stɛp, aw fɔ du dis na os.
- Aw fɔ pripia di mɛrɛsin.
- Na fayn ples fɔ gɛt vaysin.
- Na wan rili gud we fɔ gɛt vaysin.
- Aw fɔ trowe di sirinj ɛn nidul dɛn we dɛn dɔn yuz sef wan.
I rili impɔtant: Nɔ ɛva trowe nidul ɛn sirinj dɛn we yu dɔn yuz na di dɔti we yu kin trowe ɔltɛm. Dɛn fɔ put dɛn na spɛshal, tik plastic kɔntena (shap kɔntena)**. If yu nɔ gɛt wan, aks yu dɔktɔ ɔ ɔspitul bɔt wan.
Yu kin gi pikin dɛn dis mɛrɛsin?
Yɛs, dɛn kin gi pikin dɛn dis mɛrɛsin bikɔs bɔku tɛm dɛn kin no se dɛn nɔ gɛt ADA we dɛn yɔŋ. Bɔt i impɔtant fɔ tek tɛm fala di instrɔkshɔn dɛn we di dɔktɔ gi yu, bikɔs spɛshal tin dɛn de we yu fɔ tink bɔt we yu de gi dis mɛrɛsin to yɔŋ pikin dɛn.
Wetin fɔ du if yu tek bɔku mɛrɛsin?
If yu tink se yu dɔn tek mɔ pas di doz we dɛn tɛl yu fɔ tek, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta wantɛm wantɛm na di Kolombo Nashɔnal Ospital , ɔ go na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia yu.
Wetin fɔ du if yu mis wan doz fɔ mɛrɛsin?
- If yu de tek yu mɛrɛsin na ɔspitul ɔ klinik: I rili impɔtant fɔ mek yu nɔ mis di apɔntinmɛnt we yu dɔn sɛtul. If fɔ sɔm rizin yu nɔ ebul fɔ go di de we yu dɔn sɛtul, kɔl di ɔspitul wantɛm wantɛm ɛn mek dɛn no.
- If yu de tek di mɛrɛsin na os: If yu mis wan doz, tek am jɔs lɛk aw yu mɛmba. Bɔt if i dɔn lɛf smɔl fɔ lɛ yu tek yu nɛks doz, skip di doz we yu mis ɛn tek yu nɛks doz di tɛm we yu dɔn sɛtul. Nɔ ɛva tek dabl doz.
Dis mɛrɛsin kin miks wit ɔda tin dɛn? (Intarakshɔn dɛn)
Dɛn nɔr dɔn stɔdi bɔku bɔt aw ɔda mɛrɛsin, ɛbul prɔdak, ɔ supamakit kin miks wit dis mɛrɛsin.
So, i impɔtant fɔ gi yu dɔktɔ wan kɔmplit list fɔ ɔl di mɛrɛsin dɛn we yu de tek (inklud di mɛrɛsin dɛn fɔ ɔda sik dɛn, vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn). I impɔtant bak fɔ tɛl yu dɔktɔ if yu de smok ɔ drink rɔm.
Tin dɛn we yu fɔ tek tɛm wit we yu de yuz di mɛrɛsin
Yu dɔktɔ go de chɛk yu ɔltɛm we yu de gɛt dis tritmɛnt.
- Atɛnd klinik dɛm we dɛn dɔn sɛtul: Dis impɔtant fɔ si aw di mɛrɛsin de afɛkt yu bɔdi ɛn if yu sik dɛn de go dɔŋ.
- Blɔd wok: Yu dɔktɔ kin tɛl yu fɔ du blɔd tɛst ɔltɛm fɔ no aw yu imyun sistɛm de wok ɛn aw yu mɛrɛsin de wok fayn. Nɔ skip dɛn.
- Yu fɔ no bɔt di sayn dɛm: If ɛni chenj de pan yu sayn dɛm (fɔ bɛtɛ ɔr fɔ wɔs), tɛl yu dɔktɔ bɔt am.
Wetin na di bad tin dɛn we kin apin to pɔsin?
Lɛk ɛni mɛrɛsin, dis mɛrɛsin kin mek sɔm pipul dɛn gɛt sayd ɛfɛkt, bɔt nɔto ɔlman kin gɛt am.
| Tayp fɔ di sayd ɛfɛkt | Karakta |
|---|---|
| If yu gɛt dɛn sik ya, tɛl yu dɔktɔ wantɛm wantɛm. | |
| Siriɔs alɛji riakshɔn dɛn |
|
| Tɛl yu dɔktɔ if yu notis ɛni wan pan dɛn sik ya, we kɔmɔn, we nɔ de chenj, ɔ we de mɔna yu: | |
| Kɔf | Wan nyu kɔf we nɔ de dɔn. |
| Fɔ vɔmit | Nɔs ɔ vɔmit afta yu dɔn tek di mɛrɛsin. |
| Riakshכn dεm na di sayt we dεn de injεkshכn | Rɛd, pen, ɔ swel na di say we dɛn injekt. |
Dis list nɔ de inklud ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt. If yu notis ɛnitin we nɔ kɔmɔn apat frɔm dɛn tin ya, tɔk to yu dɔktɔ bɔt am.
Aw fɔ kip di mɛrɛsin?
- Stɔr am na frij: Stɔ dis mɛrɛsin na di nɔmal say na frij. Nɔ ɛva kip am na friza.
- Kip am usay pikin dɛn nɔ go ebul fɔ rich: Kip am usay smɔl pikin dɛn ɛn animal dɛn we dɛn kin mɛn na os nɔ go ebul fɔ rich.
- Kip insay di ɔrijinal pak: I bɛtɛ fɔ kip di mɛrɛsin insay in fɔs pak fɔ protɛkt am frɔm layt.
- Trowe di mɛrɛsin we dɔn pas: Nɔ yuz di mɛrɛsin afta di de we i dɔn dɔn. Aks yu dɔktɔ fɔ advays bɔt aw fɔ trowe di mɛrɛsin we dɔn pas ɔ we yu nɔ nid igen, sef wan.
Mɛsej we dɛn kin kɛr go na os
- Elapegademase na εnzym riplesmεnt tεrapi we de mek di imyun sistεm strכng, we de wik bay wan jεnεtik kכndyushכn we nכ kin apin we dεn kכl ADA dεfisiεns.
- Bifo yu bigin dis tritmɛnt, tɛl yu dɔktɔ ɔl bɔt ɔl yu mɛrɛsin, alɛji, ɛn ɔda mɛrɛsin dɛn we yu de tek.
- Fɔ fala di schedule we dɛn dɔn tɛl yu fɔ tek di mɛrɛsin ɛksaktɔli. If yu mis wan doz, nɔ ɛva tek tu doz wan tɛm.
- If yu gɛt siriɔs alɛji lɛk fɔ swel na yu fes ɔ yu lip, yu skin de rɔsh, ɔ yu nɔ ebul fɔ blo, go to dɔktɔ wantɛm wantɛm.
- Stɔr di mɛrɛsin fayn fayn wan na frij (nɔto friza) usay pikin dɛn nɔ go ebul fɔ rich.
- If yu gɛt ɛni kwɛstyɔn ɔ wɔri bɔt dis mɛrɛsin, nɔ fred fɔ tɔk to yu dɔktɔ bɔt am.
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