Yu no bɔt dis sik we nɔ kin bɔku na yu kidni? (Atipik Ɛmolaytik Yuremik Sindrɔm - aHUS)

Imajin se blɔd klɔt de fɔm insay di smɔl smɔl blɔd vesel dɛn na yu bɔdi. Ɛspɛshali na di blɔd vesel dɛn na yu kidni. We dɛn blɔd ya kin blok di blɔd fɔ go na yu kidni, siriɔs prɔblɛm dɛn lɛk we di kidni nɔ de wok fayn kin apin. Na dat kin apin pan Atypical Hemolytic Uremic Syndrome, ɔ aHUS. Pan ɔl we no mɛrɛsin nɔ de fɔ dis sik, dɛn kin ebul fɔ mɛn am fayn fayn wan wit di rayt tritmɛnt.

Wetin na di difrɛns bitwin "Typical" ɛn "Atypical" HUS?

dis kכndyushכn we dεn kכl aHUS, difrεn sכmtεm frכm di "Typical" HUS we wi kin si. di men tin we de mek di tכpik HUS na sכm kayn baktri dεm we de mek yu gεt dayariya, fכ egzampl, baktri infεkshכn dεm lεk `(E. coli)` εn `(Shigella)`. Bɔt di tin we kin mek pɔsin gɛt aHUS na mɔ kɔmpleks.

Dis sik we dɛn kɔl aHUS kin apin pan ɛni 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 tin we kin mek di sik kam. Na sik we nɔ kin apin so ɔltɛm. Pan ɔl we dɛn nɔ no ɔmɔs pipul dɛn gɛt dis sik, sɔm stɔdi dɛn dɔn sho se na tu pan ɛvri milyɔn pipul dɛn nɔmɔ na kɔntri dɛn lɛk Amɛrika gɛt dis sik.

Wetin kin mek aHUS?

Bɔku pan di aHUS kes dɛm kin kɔmɔt frɔm wan chenj na di jin dɛm, we dɛn kɔl jin muteshɔn . Bɔt nɔto ɔlman we gɛt di jin muteshɔn go gɛt dis sik. Fɔ mek di sayn dɛn sho, dɛn nid fɔ gɛt wan tin we go mek yu gɛt dis sik.

Fɔ tɔk am simpul wan, pɔsin we in jɛnɛtiks gɛt dis sik kin gɛt dis sik if wan pan dɛn tin ya apin:

• We uman gɛt bɛlɛ
• Sɔm tin dɛn we kin mek pɔsin gɛt sik
• Kansa
• Sɔm mɛrɛsin dɛn
• Wan ɔgan transplant
• Ɔda sik dɛm we nɔ de mɛn, fɔ ɛgzampul ``systemic sclerosis`` ɔ ``malignant hypertension``

Bɔt sɔmtɛm, pan lɛk af pan di wan dɛn we gɛt aHUS, dɔktɔ dɛn nɔ kin gɛt jɛnɛtik muteshon we dɛn kin fɛn. Wi kin kɔl dɛn kes ya ``idiopathic.'' Dat min se dɛn nɔ go ebul fɔ fɛn ɛni kɔz. Risach pipul dɛn biliv se dis sik na bikɔs ɔf wan jenɛtik mutation we dɛn nɔ no yet.

Wetin na di sayn dɛm fɔ aHUS?

Di simptom dɛm fɔ aHUS kin apin wantɛm wantɛm afta wan trig. Dɛn flawa ya kin bi smɔl ɔr kin tranga. If i nɔ tu te, di kidni dɛn nɔ kin afɛkt bɔku. If tin tranga, dɛn kin mek di kidni nɔ wok fayn.

We yu bigin, yu kin notis sɔm sayn dɛm lɛk dis:

• Wik pasmak ɛn nɔ gɛt layf
• 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. Pan ɔl we di kidni dɛn na di men tin we aHUS de atak, ɔda ɔgan dɛn lɛk di bren, liva, lɔng, ɛn at kin afɛkt bak we di blɔd vesel dɛn blok.

Aw dɛn kin no bɔt aHUS?

If nɔbɔdi na yu famili nɔr dɔn gɛt dis sik bifo, i kin tranga smɔl fɔ no se i gɛt aHUS. Dɔktɔ we spɛshal pan kidni sik (nephrologist) ɔ dɔktɔ we spɛshal pan blɔd sik (hematologist) go fayn fɔ no am. Dɛn go mɔs luk fɔ dɛn tri sayn ya:

1. Ɛmolaytik anemia

2. Di pletlet kɔnt we de go dɔŋ

3. Prɔblɛm dɛn we kin mek di kidni wok fayn

Yu dɔktɔ kin ɔda fɔ du difrɛn tɛst fɔ no if yu gɛt dis sik.

Wetin na di tritmɛnt dɛn we yu kin gɛt?

Tu kayn mɛrɛsin de we di FDA dɔn gri fɔ fɔ trit aHUS.

• `Ekulizumab (Soliris)`
• `Ravulizumab-cwcz (Ultomiris)`

dεn tu dכg dεm ya de pan wan grup we dεn kכl ``monoclonal antibodies.'' Fɔ tɔk am simpul wan, dεn ya na spεshal protin dεm we dεn mek na di labכtכri we de wok lεk antibodi dεm we dεn kכmכt na wi bכdi nכmal wan. Dɛn mɛrɛsin ya kin mek di pletlɛt ɛn rɛd blɔd sɛl dɛn we de na di blɔd bɔku. If dɛn bigin dis tritmɛnt ali na di sik, i kin ivin rivɛns di kidni dɛm we dɔn pwɛl.

Dɛn kin gi dɛn mɛrɛsin ya as injɛkshɔn. Bɔt dɛn kin mek yu gɛt sayd ɛfɛkt lɛk ed we de at, fiva, nɔs, ɛn bɔdi we de at. Yu dɔktɔ go tɛl yu bɔt dɛn tin ya.

Apat frɔm dat, dɛn kin yuz plasma tritmɛnt bak fɔ mɛn di sik dɛn we de sho se i gɛt di sik. Insay dis, dɛn kin gi di pɔsin plasma we dɛn tek frɔm pɔsin we gɛt wɛlbɔdi ɔ dɛn kin pul di plasma na di pɔsin in blɔd ɛn put wɛlbɔdi plasma insay.

If di kidni dɛn nɔ gri wit dɛn tritmɛnt ya, i kin nid fɔ du di kidni dayalaysis ɔ fɔ transplant di kidni .

Situeshɔn dɛn we yu nid fɔ go ɔspitul wantɛm wantɛm

If dɛn kayn bad bad tin ya apin, go na di Imejɛnsi Dipatmɛnt (ETU) na di ɔspitul we de nia yu wantɛm wantɛm.

• Rili low urine output.
• Kɔnfyushɔn ɔ lɔs di maynd klia.
• Di bɔdi kin swel bad bad wan.
• I nɔ kin izi fɔ yu fɔ blo.

Aw fɔ kip yu maynd wɛl bɔdi wae yu de liv wit de sik?

Na kɔmɔn fɔ fil strɛs ɛn wɔri wae yu de liv wit sik wae nɔr de mɛn lɛk aHUS. Di mɔr de sik ɛn de mɔr sayn dɛm wae yu de gɛt, na di mɔr de impak pan yu maynd wɛl bɔdi. Bɔt yu nɔ nid fɔ fes dis yu wan.

• Tɔk to yu fambul ɛn padi dɛn: We yu tɛl pɔsin we yu abop pan wetin yu de tink ɛn fil, dat kin mek yu fil fayn.
• Tɔk to dɔktɔ ɛn advaysa dɛn: Tɔk to yu dɔktɔ bɔt dis. Dɛn kin rifer yu to mental wɛlbɔdi advaysa if nid de.
• Tink bɔt yu ɔl yu wɛlbɔdi: Slip fayn. Fɛn we fɔ ridyus strɛs. It diet we gud fɔ yu kidni. Gɛt sɔm ɛksesaiz if yu ebul. We yu gɛt wɛlbɔdi, dat kin ɛp bak fɔ mek yu gɛt wɛlbɔdi na yu maynd.

Pan ɔl we dis na sik we yu go gɛt fɔ yu layf, if yu no di sik kwik kwik wan, yu gɛt di rayt tritmɛnt, ɛn fala di advays we dɔktɔ gi yu, yu kin ebul fɔ kɔntrol di bad tin dɛn we dis sik kin du ɛn liv nɔmal layf. So, kɔntinyu fɔ tɔk to yu dɔktɔ ɛn fala yu tritmɛnt plan.