Pen na prɔblɛm ɔltɛm fɔ pɔrsin wae gɛt sik wae de sik ( SCD ). Fɔ tɔk am simpul wan, di rɛd blɔd sɛl dɛn we de na yu blɔd kin chenj frɔm rawnd to siklɔ. Dɛn sɛl dɛn ya we tan lɛk sikl kin stɔp na di smɔl smɔl blɔd vesel dɛn na yu bɔdi, ɛn dis kin mek di blɔd nɔ flɔ . Na da tɛm de yu kin fil bad bad wan wantɛm wantɛm. Wi kin kɔl dis "pen kraysis." Dis pen kin apin mɔs na di lכw bכdi, an, leg, chεst, εn bεlε. Fɔ sɔm pipul dɛm, pen kin kɔntinyu fɔ de, ɔr kin te, bikɔs ɔf ɔda wɛl bɔdi prɔblɛm wae de sik kin kam wit. We yu de liv wit pen lɛk dis, yu kin gɛt pwɛl hat , strɛs, ɛn wɔri .
Bɔt ilɛk uskayn pen yu gɛt, bɔku we dɛn de fɔ ɛp yu fɔ gɛt fridɔm. De tin wae impɔtant pas ɔl na fɔ tɔk to yu dɔktɔ bɔt aw fɔ mek gud plan fɔ kɔntrol yu pen.
Aw yu kin manej wan pen krɛse?
Bɔrku tɛm, yu kin ebul fɔ kɔntrol de pen na os wans e dɔn bigin. Bɔku tɛm yu kin gɛt rilif wit mɛrɛsin dɛn we yu kin bay we yu nɔ de sɛl pen lɛk Paracetamol ɔ Ibuprofen . ( Bɔt mɛmba se dɛn nɔ kin gi aspirin fɔ pipul dɛn we nɔ rich 19 ia yet .) Apat frɔm dat, sɔm ɔda tin dɛn de we yu kin du fɔ ɛp.
If yu tek akshɔn jɔs lɛk aw di pen bigin, dat kin ɛp yu fɔ mek i nɔ wɔs.
Lɛ wi luk am dis we fɔ ɔndastand klia wan wetin dɛn kin du na os.
| Wetin dɛn kin du? | Di ɛp we i de gi |
|---|---|
| Drink bɔku wata ɛn wata. | If yu drink wata ɛn gɛt wata jɔs lɛk aw di pen bigin, dat kin ɛp fɔ mek di blɔd go fayn ɛn mek di pen nɔ go wɔs. |
| Yuz wan itin pad/tek hot bat | Ɔt kin ɛp fɔ mek di blɔd vesel dɛn rilaks ɛn mek di blɔd go bak na di say dɛn we di sik afɛkt, ɛn dis kin mek di pen nɔ bɔku. |
| Tray fɔ masaj ɔ akupankcha. | Dɛn tin ya kin ɛp fɔ mek di mɔsul dɛn rilaks, fɔ mek di blɔd go fayn, ɛn fɔ mek di pen nɔ bɔku. I rili fayn bak fɔ praktis di we aw yu de rilaks. |
| Distrakt yusɛf. | Bifo yu tink bɔt di pen we yu de fil, du sɔntin we yu lɛk. Wach TV, lisin to myuzik, ɔ tɔk to yu padi. Dis kin ɛp yu fɔ pul yu maynd pan di pen. |
Bɔt sɔntɛnde, if dɛn tin ya nɔ ɛp, ɔ if di pen rili bad, yu ɔ yu pikin go nid fɔ go na ɔspitul. Na de, di dɔktɔ kin gi yu IV wata ɛn tin dɛn we strɔng fɔ mek yu nɔ fil pen. If yu nɔ ebul fɔ bia di pen, nɔ jɔs de na os. Go na di ɔspitul imejensi rum (ETU) we de nia yu kwik kwik wan.
Bɔku dɔktɔ dɛn kin gi pipul dɛn we gɛt siklɛt sik wan plan fɔ mɛn dɛn pen fɔ ɛp dɛn fɔ dil wit pen. I de sho di step dɛm wae yu kin tek fɔ kɔntrol yu pen fɔ yusɛf. I de tɛl yu bak aw ɔda dɔktɔ, nɔs, ɔ ambulans wokman dɛn kin ɛp yu we ɛnitin apin we nɔ izi fɔ yu. So, tɔk to yu dɔktɔ bifo yu bigin fɔ fil pen ɛn mek wan plan.
Us mɛrɛsin dɛn de fɔ ridyus ɛn nɔr de fil pen?
Bɔku patikyula mɛrɛsin dɛn de we kin ɛp fɔ ridyus di bɔku bɔku tin dɛn we kin mek pɔsin fil pen.
- Haydroksiyuria: .If yu tek dis mɛrɛsin ɛvride, dat kin mek yu nɔ gɛt bɔku pen na big pipul ɛn pikin dɛn.
- L-glutamine (L-glutamine - Endari): We yu yuz am, i kin ridyus di lɔng tɛm we yu kin de na ɔspitul bikɔs ɔf pen ɔ i kin ridyus di nɔmba fɔ di wan dɛn we kin admit na ɔspitul.
- Crizanlizumab-tmca (Adakveo): Dis na wan pan di nyu mɛrɛsin dɛm we dɛn dɔn gri fɔ fɔ siklɛt sik. Na tritmɛnt we dɛn kin yuz fɔ mɛn pipul dɛn. Dis min se dis drɔg de wok bay we i de tɔch di rɛd blɔd sɛl dɛn spɛshal wan fɔ stɔp dɛn fɔ mek dɛn nɔ gɛda togɛda. dis de ridyus di nכmba fכ di vaso-occlusive crises (VOC), we kin mek i nכ de fil pen εn di intanεt כgan dεm dεm de pwεl.
Impɔtant notis: Dɔktɔ dɛn bin de yuz wan mɛrɛsin we dɛn kɔl `Voxelotor (Oxbryta)` fɔ mek dɛn nɔ mek rɛd blɔd sɛl dɛn we nɔ de wok. Bɔt insay Sɛptɛmba 2024, di kɔmni we de mek di mɛrɛsin pul am na di makit bikɔs dɛn bin de wɔri bɔt sef. Di kɔmni bin disayd se di prɔblɛm dɛn we di mɛrɛsin go gɛt pas di bɛnifit dɛn we i go gɛt. If yu dɔn ɔlrɛdi de tek `Oxbryta`, duya tɔk to yu dɔktɔ wantɛm wantɛm bɔt aw fɔ bigin ɔda tritmɛnt.
Yu fɔ rili tɔk to yu dɔktɔ fɔ no if dɛn mɛrɛsin ya fayn fɔ yu ɔ yu pikin.
Wetin dɛn kin du fɔ pen we nɔ de dɔn?
Di sik wae sik kin gɛt fɔ lɔng tɛm kin mek pɔrsin gɛt prɔblɛm wae de mek pɔrsin fil pen fɔ lɔng tɛm, mɔr lɛk pan pipul dɛm wae dɔn ol. Fɔ ɛgzampul, if blɔd nɔ de flɔ ɔlsay na di bɔdi, dat kin pwɛl di bon ɛn jɔyn dɛn, ɛn dis kin mek pɔsin fil pen fɔ lɔng tɛm.
Fɔ mek yu ebul fɔ kɔntrol dis kayn pen we nɔ de dɔn, yu dɔktɔ kin gi yu mɛrɛsin fɔ mɛn yu pen fɔ tek ɛvride. Dɛn kin tɛl yu bak fɔ yuz fizik tritmɛnt ɔ ɔtpidik divays fɔ ɛp fɔ sɔpɔt yu bak ɛn yu an ɛn fut dɛn. Sɔntɛnde, dɔktɔ dɛn kin tɛl yu fɔ du ɔpreshɔn fɔ kɔrɛkt di prɔblɛm we de mek yu fil pen ɔ fɔ mek yu nɔ gɛt wan nerv fɔ sɔm tɛm fɔ mek yu nɔ fil pen.
Aw yu kin kɔntinyu fɔ gɛt strɔng maynd wit dis pen?
Fɔ liv wit siklɛt sik kin rili tranga, mɔ fɔ pikin dɛn. Pipul wae de fil pen ɔltɛm kin gɛt prɔblɛm wit dɛn maynd, lɛk fɔ wɔri ɛn pwɛl hat. Dɛn kin fil se dɛn nɔ de pan di tin dɛn we ɔda pipul dɛn kin ɛnjɔy bikɔs ɔf di sik we dɛn gɛt. Dɛn filin ya kin mek ɔda prɔblɛm dɛn we di sik kin kam wit, wɔs.
If yusɛf de fil strɛs, sɔri, ɔr nɔr gɛt op, advays ɔr saykotɛrapi kin ɛp yu bad bad wan. Wan pɔsin we de gi advays bɔt mental wɛlbɔdi biznɛsWe yu tɔk bɔt yu prɔblɛm wit yu dɔktɔ, yu kin fɛn we fɔ liv fayn ɛn gɛt wɛlbɔdi wit de pen ɛn ɔda prɔblɛm dɛn we kin kam wit dis sik.
Dɔn bak, aks yu dɔktɔ ɔr nɔs bɔt sɔpɔt grup dɛm usay ɔda pipul ɛn famili dɛm wae gɛt siklɛt sik kin kam togɛda. Dɛn grup ya kin gi yu chans fɔ sheb ɛkspiriɛns wit ɔda pipul dɛm bɔt aw e kin tan lɛk fɔ liv wit dis sik, ɛn fɔ gɛt advays fɔ bia wit pen ɛn ɔda prɔblɛm dɛm.
Mɛsej we dɛn kin kɛr go na os
- Di pen we sik kin gɛt na rial tin. Nɔ tek am layt.
- Tɔk to yu dɔktɔ bɔt wetin fɔ du we yu fil pen ɛn kam wit gud plan.
- Yu fɔ no bɔt tin dɛn we yu kin du na os (fɔ drink wata, fɔ put ɔt) jɔs lɛk aw di pen bigin.
- If di pen rili bad ɔ yu nɔ ebul fɔ kɔntrol am, go na di ɔspitul in Imejɛnsi Dipatmɛnt (ETU) wantɛm wantɛm.
- Tɔk to yu dɔktɔ bɔt di mɛrɛsin dɛn we yu go tek fɔ lɔng tɛm we go mek yu nɔ gɛt pen.
- Tek kia ɔf yu maynd wɛlbɔdi bak. If nid de, nɔ shek fɔ aks fɔ advays ɔ jɔyn sɔpɔt grup.
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