Wi ɔl no se dɛn kin trit sɔm sik dɛn na di famasi. Bɔt sɔm sik dɛn de we nɔ kin apin so ɔltɛm, we dɛn kin trit na ɔspitul, we dɔktɔ dɛn kin kia fɔ dɛn dairekt wan. Ɛmin na wan pan dɛn kayn mɛrɛsin dɛn de, dɛn kin yuz am pan spɛshal kes dɛn, ɛn dɛn kin gi am insay di bɛlɛ. So tide, lɛ wi tɔk smɔl bɔt dis Hemin vaysin, wetin i de du, udat dɛn gi am to, ɛn di tin dɛn we yu nid fɔ no bɔt am.
Us kayn mɛrɛsin na Hemin?
Dis mεdisin we dεn kכl Hemin dεn kin yus fכ trit wan rare kכndyushכn we dεn kכl `Acute Intermittent Porphyria.` Dis na sכm kכmplikt nem, so lɛ wi εksplen am simpul wan.
Dis na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. fכ bi prεsis, i de kכz fכ wan difεkt we de insay di prכsεs fכ prodyuz wan kכmכpכnt na wi bכdi we dεn kכl ‘Hεm’. dis ‘Hεm’ implεnt fכ di εmoglobin we de insay wi rεd bכdi sεl dεm. we dis prכsεs de ambɔg, kεmεkal dεm we de du bad kin kam togεda na di bכdi, we kin mek difrεn simptom dεm lεk bεlε pen bad bad wan εn prכblεm na di nεv sεstem.
So, dis mεdisin we dεn kכl Hεmin (di brand nem fכ di mεdisin kin bi `Panhematin`) de kכntro di dεfisit na di prodakshכn fכ `Heme` εn i de lεv di simptom dεm. In ɔda wɔd, dis na mɛrɛsin wae de afɛkt di bɛsis prɔses wae de kɔz de sik.
Tin dɛm fɔ tɛl yu dɔktɔ bifo yu yuz dis mɛrɛsin
Bikɔs dis na wan mɛrɛsin we rili spɛshal, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt yu kɔmplit wɛlbɔdi istri bifo yu bigin fɔ tek tritmɛnt. Mek shɔ se yu tɛl dɛn mɔ bɔt dɛn tin ya:
- Blɔd klɔt prɔblɛm: If yu gɛt ɛni blɔd klɔt prɔblɛm (fɔ ɛgzampul, blɔd we nɔ de stɔp kwik), tɛl wi bɔt am.
- Alɛji: If yu gɛt ɛni alɛji, nɔto jɔs fɔ dis mɛrɛsin we dɛn kɔl Ɛmin, bɔt bak fɔ lɛtɛks, ɔda mɛrɛsin, it, ɛn ivin sɔm day, mek shɔ se yu tɛl wi bɔt am.
- Bɛlɛ: If yu gɛt bɛlɛ ɔ yu de tray fɔ gɛt bɛlɛ, i impɔtant fɔ tɛl yu dɔktɔ.
- If yu na mama we de gi pikin in mama in bɛlɛ: If yu na mama we de gi pikin in bɛlɛ, yu fɔ tɛl yu dɔktɔ bak bifo yu bigin fɔ trit am.
Aw dɛn kin gi di Hemin vaysin?
Dis nɔto mɛrɛsin we yu kin kɛr go na os. Na mɛrɛsin we dɛn kin gi as salin sɔlvushɔn insay wan vein (infusion) bay wan tren mɛdikal pɔshɔnal na ɔspitul ɔ klinik. Di mɛdikal wokman dɛm go de wach yu kɔndishɔn ɔltɛm we yu de gɛt dis tritmɛnt.
Yu kin gi pikin dɛn dis mɛrɛsin?
Dɛn kin gi dis mɛrɛsin to yɔŋ pikin dɛn we dɔn pas 16 ia pan sɔm spɛshal kes dɛm. Bɔt dɛn kin tek tɛm du am ɛn fɔ spɛshal rizin dɛn. So, if yu de gi yu pikin dis mɛrɛsin, i impɔtant fɔ mek yu tɔk fayn wit yu dɔktɔ we de mɛn pikin dɛn ɛn ɔndastand ɔltin klia wan.
Wetin kin apin if yu tek bɔku mɛrɛsin?
As dɛn de gi dis mɛrɛsin ɔnda di sɔpɔtishɔn fɔ dɔktɔ, di chans fɔ mek ‘ɔvados’ apin rili smɔl. Bɔt if yu tink se yu dɔn tek di mɛrɛsin pasmak, kɔl di Nashɔnal Pɔyzin Infɔmeshɔn Sɛnta na di Kɔlɔmbɔ Nashɔnal Ospital ɔ di ɔspitul in Imejɛnsi Tritmɛnt Yunit (ETU) wantɛm wantɛm.
Dɛn dɔn gi yu dis mɛrɛsin fɔ yu nɔmɔ. Nɔ sheb am wit ɛni ɔda pɔsin fɔ ɛni rizin.
Prɔblɛm kin de wit ɔda mɛrɛsin dɛn? (Intarakshɔn dɛn)
Yɛs, dis kin mek prɔblɛm wit sɔm mɛrɛsin dɛn. Dis impɔtant mɔ if yu de tek mɛrɛsin dɛn we de mek blɔd nɔ klot, lɛk wɔfarin.
Dis list nɔ de ɔlsay. So, mek shɔ se yu tɛl yu dɔktɔ bɔt ɔl di mɛrɛsin dɛn we yu de tek (inklud di mɛrɛsin dɛn we dɛn kin gi yu ɛn di mɛrɛsin dɛn we dɛn kin gi yu na kɔt, vaytamɛn dɛn, ɛbul mɛrɛsin dɛn, ɛn sɔpɔtmɛnt dɛn), ɛn bak if yu de smok, drink rɔm, ɔ yuz ɔda mɛrɛsin dɛn. Na da tɛm de nɔmɔ dɛn go ebul fɔ trit yu fayn fayn wan.
Sayd ɛfɛkt dɛm wae kin apun wae dɛn de trit am
Lɛk ɛni mɛrɛsin, di Hemin vaysin kin mek sɔm sayd ɛfɛkt. Sɔm pan dɛn tin ya kin nid fɔ pe atɛnshɔn to dɛn wantɛm wantɛm, bɔt ɔda wan dɛn nɔ kin rili siriɔs. Lɛ wi luk dɛn tin ya na wan tebul.
| Sayd ifekt dɛm fɔ di Hemin vaysin | |
|---|---|
| Tin dɛn fɔ tɛl yu dɔktɔ ɔ di wan dɛn we de wok na di dɔktɔ wantɛm wantɛm | |
| Alɛji Riakshɔn dɛn | Skin iritashɔn, it ɔ rash, swel na di fes, lip ɔ tong. |
| Chenj we yu de pis | di dכn כ כda chenj na di כmכnt we di urine de kכmכt. |
| Blɔd we nɔ de kɔmɔt fayn | I izi fɔ brus ɔ blɔd we nɔ go stɔp. |
| Taya we nɔ kɔmɔn | Fɔ fil se yu taya ɔ yu wik bad bad wan. |
| Tin dɛm wae nɔr kin siriɔs, bɔt dɛn fɔ ripɔt if dɛn kɔntinyu fɔ de | |
| Mild fiva | Fɔ fil wam smɔl na di bɔdi. |
| Pen na di say we dɛn injɛkshɔn | Pen ɔ inflamɛns rawnd di say we dɛn injekt. |
Dis list nɔ go gɛt ɔl di sayd ɛfɛkt dɛn we pɔsin kin gɛt, so if yu gɛt ɛnitin we nɔ kɔmɔn, nɔ fred fɔ tɔk to yu dɔktɔ bɔt am.
Mɛsej we dɛn kin kɛr go na os
- Hemin na spɛshal mɛrɛsin we dɛn kin gi na ɔspitul fɔ trit wan rare, hereditary condition we dɛn kɔl `Acute Intermittent Porphyria`.
- Bifo yu bigin fɔ trit yu, i rili impɔtant fɔ tɛl yu dɔktɔ bɔt ɔl yu wɛlbɔdi prɔblɛm, alɛji, ɛn ɔl di mɛrɛsin dɛn we yu de tek.
- Dis mɛrɛsin na wan we we tren fɔ mɛn pipul dɛn kin gi am tru wan vein (IV infusion). Dis nɔto mɛrɛsin fɔ kɛr go na os.
- Yu fɔ no bɔt siriɔs sayd ɛfɛkt dɛm lɛk alɛji ɛn blɔd we nɔ kɔmɔn. If yu notis ɛnitin lɛk dis, tɛl di dɔktɔ dɛn wantɛm wantɛm.
- If yu gɛt ɛni kwɛstyɔn bɔt dis mɛrɛsin, ilɛksɛf i smɔl, duya aks yu dɔktɔ.
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