Wetin go apin if blɔd klɔt fɔm insay di smɔl smɔl blɔd vesel dɛn na yu kidni, we go mek blɔd nɔ go na yu kidni? I kin mek pɔsin fred fɔ tink bɔt am, nɔto so? Na dat wi de tɔk bɔt tide. Dɛn kɔl dis Atypical Hemolytic Uremic Syndrome, ɔ fɔ shɔt tɛm aHUS. Pan ɔl we dɛn nɔ go ebul fɔ mɛn am, dɛn kin ebul fɔ mɛn am fayn wit di rayt tritmɛnt. So lɛ wi lan mɔ bɔt am.
Wetin na di difrɛns bitwin Atypical ɛn Typical HUS?
Yu kin dɔn yɛri bɔt wan kɔndishɔn we dɛn kɔl HUS. Wi de kɔl am "Typical HUS." Na wan baktri infεkshכn lεk E. coli, we kin mek yu gɛt dayarɛa. Bɔt di kɔndishɔn we wi de tɔk bɔt tide, aHUS, difrɛn.
Dis kכndyushכn, we dεn kכl aHUS, kin apin pan εni ej. Na yɔŋ pikin dɛn, i kin afɛkt bɔy pikin ɛn gyal pikin dɛn ikwal. Bɔt as dɛn de ol, uman dɛn kin gɛt dis sik mɔ ɛn mɔ. Dis na bikɔs we uman gɛt bɛlɛ kin bi wan big tin we kin mek pɔsin gɛt di sik. I nɔ kin apin so ɔltɛm so sɔm stɔdi dɛn dɔn sho se na tu pan ɛvri milyɔn pipul dɛn nɔmɔ gɛt dis sik.
Wetin mek aHUS de divɛlɔp?
Fɔ tɔk am simpul wan, bɔku pipul dɛn we kin gɛt aHUS kin gɛt chenj na dɛn bɔdi, ɔ jin chenj na dɛn bɔdi. Tink bɔt am lɛk se ‘bɔt’ de na yu bɔdi we kin mek yu gɛt dis sik. Bɔt jɔs we yu gɛt da bɔtin de, dat nɔ kin mek yu gɛt di sik ɔtomɛtik wan. I nid sɔntin we de na do to am fɔ ‘tɔn am’, ɔ aktiv am. Wi kin kɔl dɛn tin ya ‘trig’.
Di men tin dɛn we kin mek pɔsin du dis kin bi:
- We uman gɛt bɛlɛ
- Sɔm tin dɛn we kin mek pɔsin gɛt sik
- Kansa
- Sɔm mɛrɛsin dɛn
- Wan ɔgan transplant
- Sɔm mɛrɛsin wae kin kam fɔ lɔng tɛm (lɛk sistɛm sklerɔsis ɔr malignant haypatɛnshɔn) .
I sɔprayz fɔ no se pan lɛk af pan di wan dɛn we gɛt aHUS, dɔktɔ dɛn nɔ gɛt wan jɛnɛtik muteshɔn we dɛn kin fɛn. Wi kin kɔl dɛn kayn kes ya "idiopathic," we min se dɛn nɔ no di kɔz. Risach pipul dɛn biliv se dis sik na bikɔs ɔf wan jenɛtik mutation we dɛn nɔ no yet.
Wetin na di sayn dɛm we de sho se yu gɛt dis sik?
di aHUS simptom dεm kin apin wan wan afta wan trig dεm dכn apin. Flare-up kin bi smɔl ɔ bad bad wan. If i nɔ tu te, i nɔ kin afɛkt di kidni dɛn bɛtɛ, bɔt if i tranga, i kin mek di kidni nɔ wok fayn .
Di sayn dɛm wae yu kin gɛt na di fɔs tɛm:
- Bɔdi kin at ɛn taya pasmak
- Fɔ fil jɔs lɛk aw i nɔ wɛl
Dis na sik we de go bifo. Dis min se di sik kin wɔs as tɛm de go, mɔ if dɛn nɔ no di sik kwik kwik wan. aHUS kin afɛkt yu kidni dɛn mɔ. Bɔt ɔda pat dɛn lɛk di bren, di liva, di lɔng, ɛn di at kin afɛkt bak we di blɔd vesel dɛn blok.
| Ki pɔynt dɛn we yu fɔ tink bɔt fɔ no if yu gɛt di sik | Test ɛn wetin dɛn de luk fɔ |
|---|---|
| 3 sayn dɛm we di dɔktɔ de luk fɔ | 1. Hemolytic anemia: Dɛn kin pwɛl di rɛd blɔd sɛl dɛn kwik kwik wan pas aw dɛn kin mek dɛn. 2. Di pletlet dεm we de dכn: Di nכmba fכ di sεl dεm we de εp fכ blכd kכlכt. 3. Kidni prɔblɛm: Di kidni nɔ de wok fayn. |
| Test dɛn we dɛn kin du |
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Aw fɔ no di sik?
If nɔbɔdi na yu famili nɔr dɔn gɛt dis sik bifo, i kin tranga smɔl fɔ no se i gɛt aHUS. Bɔrku tɛm, na nefrɔlɔjis ɔr ɛmatɔlɔjis na di bɛst pɔsin fɔ no bɔt dis. Dɛn go pe spɛshal atɛnshɔn to di tin dɛn we wi dɔn tɔk bɔt na di tebul we de ɔp ɛn rifer yu fɔ di tɛst dɛn we yu nid.
Wetin na di tritmɛnt dɛn we yu kin gɛt?
Laki, tu mɛrɛsin dɛn de we dɛn dɔn gri fɔ yuz fɔ aHUS.
- `Ekulizumab (Soliris)`
- `Ravulizumab-cwcz (Ultomiris)`
dεn tu dεm ya de pan wan klas fכ dכg dεm we dεn kכl `monoclonal antibodies.` fכ simpul wan, dεn ya na artificially mek protin dεm we de wok lεk wi bכdi in nεchכral antibodi dεm. Dɛn kin kɔntrol wan pat pan di bɔdi in imyun sistɛm ɛn stɔp fɔ mek blɔd klɔt.
Wan drɔg we dɛn kɔl ``Eculizumab`` kin mek di nɔmba fɔ di pletlɛt ɛn rɛd blɔd sɛl dɛn we de na yu blɔd bɔku. If dɛn bigin fɔ trit am kwik kwik wan , dis mɛrɛsin kin ivin rivɛns sɔm pan di damej dɛn we de na di kidni dɛn.
Dɛn kin gi dɛn tu mɛrɛsin ya bay we dɛn de injɛkshɔn. Dɛn kin mek yu gɛt smɔl smɔl sayd ɛfɛkt, lɛk ed we de at, tin dɛn we tan lɛk flu, bɛlɛ we de at, ɛn bɔdi we de at. Di tin we impɔtant pas ɔl na dat, risk de fɔ gɛt siriɔs infɛkshɔn, lɛk mɛningaytis (mɛningokɔk sik), we yu tek dɛn mɛrɛsin ya. So yu dɔktɔ go tɛl yu fɔ gɛt shot fɔ dat, ɛn i kin gi yu antibayɔtik bak fɔ mek yu nɔ gɛt di sik.
Apat frɔm dɛn mɛrɛsin ya, dɛn kin yuz plasma tritmɛnt bak. Dis kin min fɔ gi di pɔsin plasma (di likwid pat pan di blɔd) we dɛn tek frɔm pɔsin we gɛt wɛlbɔdi (plasma infusion) ɔ pul di pɔsin in plasma ɛn put wɛlbɔdi plasma insay (plasma exchange).
If di kidni dɛn nɔ du ɛni wan pan dɛn tritmɛnt ya, di las tin we dɛn go du na fɔ daylayz di kidni ɔ fɔ transplant di kidni .
Sɔm prɔblɛm dɛn we kin apin ɛn tin dɛn we kin apin kwik kwik wan
Apat frɔm di kidni we nɔ de wok fayn, aHUS kin mek ɔda prɔblɛm dɛn.
| Posisibul komplikashon dem fo aHUS | |
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| Ustɛm fɔ go na di ɔspitul in ETU (Imergency Treatment Unit) wantɛm wantɛm | |
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Liv wit dis sik ɛn mɛntɛl hεlth
Na nɔmal tin fɔ fil pwɛl hat ɛn wɔri wae yu de liv wit sik lɛk dis fɔ lɔng tɛm. Nɔto yu fɔlt. Na dat mek i impɔtant fɔ tek kia ɔf yu maynd wɛlbɔdi ɛn bak yu bɔdi wɛlbɔdi .
- Aks yu mɛdikal tim fɔ ɛp: Dɔktɔ, nɔs, ɛn soshal woka dɛn kin gayd yu fɔ go na say dɛn we yu go gɛt di saykolojik sɔpɔt we yu nid.
- Si pɔsin we de gi advays: We yu tɔk to pɔsin we gɛt laysens fɔ advays yu, dat kin ɛp fɔ mek yu nɔ gɛt bɔku prɔblɛm ɛn fɔ mek yu gɛt di trɛnk na yu maynd fɔ bia wit dis prɔblɛm.
- Tek kia ɔf yusɛf: Gɛt bɛtɛ slip. Fɛn we fɔ ridyus strɛs. It tin we fayn fɔ yu kidni. Gɛt ɛksesaiz as yu ebul. Dɛn tin ya kin gɛt big impak pan yu ɔl wɛl bɔdi.
- Tɔk to di wan dɛn we yu lɛk: We yu tɔk bɔt dis wit yu fambul ɛn padi dɛn, dat go mek yu fil fayn.
Mɛsej we dɛn kin kɛr go na os
- aHUS na wan sik we nɔ kin apin bɔt we rili siriɔs we kin kam bikɔs ɔf wan jɛnɛtik kɔz ɛn wan ɔda tin we kin mek pɔsin gɛt bɛlɛ ɛn infɛkshɔn.
- Dis kin apin mɔ we blɔd klɔt fɔm na di smɔl smɔl blɔd vesel dɛn na di kidni ɛn ɔda ɔgan dɛn.
- Anemia, di pletlɛt dɛn we nɔ de bɔku, ɛn di kidni dɛn we nɔ de wok fayn na di men sayn dɛn.
- Pan ɔl we dɛn nɔ go ebul fɔ mɛn dis sik ɔltogɛda, if dɛn no di sik kwik kwik wan ɛn trit am fayn, dɛn kin kɔntrol am fayn fayn wan, dɛn kin avɔyd prɔblɛm dɛn, ɛn dɛn kin liv nɔmal layf.
- If yu gɛt dɛn sik ya ɔ yu gɛt ɛni dawt bɔt dis, go to yu dɔktɔ wantɛm wantɛm fɔ advays.
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