Yu gɛt wata sist bak na yu kidni (Polycystic Kidney Disease)? Lɛ wi tɔk bɔt dis!

Yu dɔn ɛva yɛri bɔt sik we smɔl smɔl sak dɛn we ful-ɔp wit wata kin mek insay di kidni dɛn? Sɔntɛm sɔmbɔdi na yu famili gɛt am, ɔ yu dɔn yɛri bɔt am sɔnsay. Dis na wetin wi kin kɔl Polycystic Kidney Disease (PKD) . Di nem kin tan lɛk se i de mek pɔsin fred smɔl, bɔt fɔ no mɔ bɔt am kin mek sɛns. So, mek wi tok abaut PKD in mo ditel tide.

Wetin na PKD? Fɔ tɔk am simpul wan...

Fɔ tɔk am simpul wan, Polycystic Kidney Disease (PKD) na wan sik we yu kin gɛt bɔku bɔku sist dɛn we ful-ɔp wit wata, we tan lɛk smɔl smɔl blista dɛn, insay yu kidni . Na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Dis min se yu fɔ gɛt wan jin we dɔn chenj na yu bɔdi fɔ mek yu ebul fɔ gɛt am. Dis rili difrɛn frɔm di kidni sist, we kin fɔm pan yu kidni nɔmɔ ɛn nɔ kin du bad.

dis sist dεm we de fכm bikoz fכ PKD kin sכmtεm sכmtεm big εn mek di tu kidni dεm big. Imajin, sɔntɛnde dɛn sist ya kin mek di kidni wet to 30 pawn (lɛk 13.5 kilogram)! Dɔn, wi kidni dɛn nɔ kin ebul fɔ du dɛn men wok igen fɔ filta dɔti tin dɛn we de kɔmɔt na di blɔd. As tɛm de go, dis sik kin tɔn to Kronik Kidni Disease , we kin mek di kidni nɔ wok fayn . Infakt, PKD na di kɔz fɔ lɛk 2% pan di kidni dɛm we nɔ de wok fayn na Amɛrika. Bɔrku pipul dɛm wae gɛt PKD go nid fɔ gɛt dayalaysis ɔr gɛt kidni transplant sɔm tɛm na dɛn layf.

So, if dɔktɔ no se yu gɛt PKD, di tin we impɔtant pas ɔl na fɔ nɔ panik bɔt fɔ wok wit am fɔ mek gud tritmɛnt plan fɔ manej di prɔblɛm dɛn we kin kam wit dis sik.

Wetin na di men kayn PKD?

Tu men kayn PKD de. Lɛ wi lan smɔl bɔt dɛn.

1. Ɔtosɔmal Dɔminant Polisistik Kidni Disiz (ADPKD) .

Dis na di kayn PKD we kɔmɔn pas ɔl. Bɔku tɛm, dɛn kin no am we pɔsin big, we i ol bitwin 30 ɛn 50. Bɔt sɔntɛnde, i kin apin we i smɔl ɔ we i yɔŋ. Fɔ mek yu gɛt dis kayn PKD, wan pan yu mama ɛn papa fɔ gɛt di jin we de chenj. Pipul dεm we gεt ADPKD gεt dis mכtεshכn na di jin dεm we dεn kכl `PKD1` כ `PKD2`.

2. Ɔtosɔmal Rɛsɛsiv Polisistik Kidni Disiz (ARPKD) .

Dis na wan kayn we we nɔ kin apin so ɔltɛm. Dɛn kin kɔl am bak infantile PKD . i kin apin we di pikin stil de na di bכdi, dat na di tεm we di pikin de divεlכp., di kidni dεm nכ de divεlכp fayn. Bɔku tɛm, dɔktɔ dɛn kin no dis we dɛn de du ɔltra saund skan bifo di pikin we dɛn gɛt bɛlɛ ɔ afta dɛn bɔn di pikin. fכ mek pikin gεt dis kayn ARPKD, in mama εn papa tu fכ gεt di jin mכtεshכn we dεn kכl `PKHD1`, εn di pikin fכ gεt di jin frכm dεn tu.

Aw kɔmɔn tin fɔ PKD?

Statistikin sho se na lɛk 500,000 (500,000) pipul dɛn we gɛt PKD na Amɛrika nɔmɔ.

Di kayn we wi bin dɔn tɔk bɔt bifo tɛm, ADPKD, na bɔku tin pas ARPKD. Na lɛk 90% pan di pipul dɛm wae gɛt PKD gɛt ADPKD. ARPKD na wan sik we nɔ kin apin so ɔltɛm. I kin afɛkt lɛk wan pan ɛvri 25,000 pipul dɛn.

Wetin na di kɔmɔn sayn dɛm fɔ PKD?

Di sayn dɛm kin difrɛn difrɛn wan fɔ di kayn PKD wae yu gɛt.

Di simptom dɛm fɔ ADPKD

Pipul wae gɛt ADPKD, di kayn wae wae kin pasmak, nɔr kin gɛt dis sik te dɛn big. Sɔntɛnde, di sist dɛn we de fɔm na di kidni dɛn nɔ kin notis te dɛn rili big. If di sayn dɛm wae de sho se yu gɛt dis sik, dɛn kin bi:

• Pen na di bak ɔ sayd (dɛn kin kɔl am bak ``flank pen'') .
• Di ay blɔd prɛshɔn
• Yu ed kin at ɔltɛm
• Blɔd we de na di urine (Hematuria) .
• Urinary tract infection (UTI) we kin kam bɔku tɛm .
• Kidni ston dɛn

Di simptom dɛm fɔ ARPKD

Bebi dεm we gεt ARPKD, we nכ kin bכku, kin sho di sayn dεm we dεn bכn כ we dεn sכm pikin. Sɔntɛnde, dɔktɔ kin si sist na di pikin in kidni we dɛn de du ɔltrasɔund bifo i bɔn.

If pikin we dɛn jɔs bɔn gɛt ARPKD, dɛn kin gɛt sɔm sayn dɛn lɛk:

• Di wet we dɛn bɔn we dɛn bɔn smɔl
• Di bɛlɛ we dɔn swel
• Fɔ gɛt ay blɔd prɛshɔn we dɛn bɔn am
• I nɔ kin izi fɔ yu fɔ blo

If yu gɛt ARPKD we yu smɔl, yu kin gɛt sɔm sayn dɛn lɛk:

• Growth failure (dɛn kɔl dis ``Growth failure'') .
• Urinary tract infection (UTI) we kin kam bɔku tɛm .
• Di ay blɔd prɛshɔn
• Pen na di bɛlɛ ɔ di bɔdi we de dɔŋ

if ARPKD de insay di pikin, skan kin sho dεn tin ya:

• Big pas di nɔmal kidni dɛn
• Lכw amniotik fכluid lεvεl

Yu tink se di sayn dɛm fɔ PKD kin apia kwik kwik wan ɔltɛm?

Nɔ, i nɔ de du dat. Bɔrku tɛm dis sik nɔr kin de na di klinik, ɛn nɔr kin gɛt ɛni sayn . Dat min se di sik kin kam insay di bɔdi we nɔ gɛt ɛni sayn na do. Imajin, lɛk af pan pipul dɛm wae gɛt dis sik nɔr kin ivin no se dɛn gɛt am wae dɛn de liv. Bɔku tɛm, di sayn dɛn kin apin afta dɛn wata blista (cyst) dɛn de dɔn gro.

Wetin kin mek pɔsin gɛt PKD?

As wi bin dɔn tɔk, di men tin we kin mek pɔsin gɛt PKD na di tin dɛn we kin chenj na di jɛnɛtiks . Yu no se di jin dɛn tan lɛk di men tin dɛn we de mek wi bɔdi de bil. Wi kin gɛt dɛn jin ya frɔm wi mama ɛn papa. Dɛn jin ya de sho aw wi bɔdi fɔ gro ɛn wok. sכmtεm, we di εmbrayo stej, dis jin de gεt mכtεshכn εn dεn nכ de kכpi am fayn fayn wan. If yu gɛt dis kayn chenj na yu jɛnɛtiks, dɛn kin pas am bak to yu pikin dɛn. Bɔku tɛm, PKD kin divɛlɔp dis we.

Bɔt i nɔ kin apin so ɔltɛm, ivin if di mama ɛn papa dɛn ɔl tu nɔ gɛt dis jin, di sik kin kam bikɔs ɔf wan random mutation na di jin.

Wetin na de risk factor fɔ dis sik?

Bikɔs PKD na jɛnɛtik kɔndishɔn, di men tin we kin mek yu gɛt am na yu famili istri. Dat min se, ɛni wan pan yu mama ɛn papa gɛt di sik (especially if ADPKD) ɔ yu mama ɛn papa ɔl tu gɛt di sik (insay di kes fɔ ARPKD).

Wetin na di prɔblɛm dɛn we pɔsin kin gɛt we i gɛt PKD?

PKD kin mek big pipul ɛn pikin dɛn gɛt siriɔs wɛlbɔdi prɔblɛm. Sɔmtɛm wetin wi kin si as sayn dɛm fɔ PKD kin rili bi kɔmplikeshɔn. Fɔ ɛgzampul:

• Kidni ston dɛn
• Di ay blɔd prɛshɔn
• Infεkshכn dεm na di urinary tract (UTI) .

Apat frɔm dat, PKD kin mek ɔda siriɔs prɔblɛm dɛn lɛk:

• di bכdi we de bכn na di bren (dεn kכl am ``Brain aneurysms'') .
• Prɔblɛm na di kɔlon, fɔ ɛgzampul, divɛrtikulayt, we na wan sik we smɔl smɔl paus dɛn kin fɔm na di kɔlon ɛn gɛt di sik
• Prɔblɛm dɛn we gɛt fɔ du wit di at valv
• Kidni we nɔ de wok fayn
• Liva sist ɛn pankrias sist
• di hεy blכd prεshכn we uman bεlε (dεn kכl am ``Preclampsia'') .

Dis kin kil pikin dɛm we gɛt siriɔs ARPKD. di fכs mכnt na layf rili implεnt fכ di pikin dεm we dεn bכn wit ARPKD, biכs dεn kin gεt bad bad respiratory distress εn kidni fεil insay da tεm de.

Aw dɛn kin no se pɔsin gɛt PKD?

Na nefrɔlɔjis (dɔktɔ we spɛshal pan kidni sik) kin ple di men wok fɔ no ɛn trit PKD. I go tek tɛm luk yu sayn dɛm ɛn yu famili histri, ɛn i kin ɔda fɔ mek dɛn tek yu imej ɛgzam fɔ chɛk yu kidni dɛm, lɛk:

• Kidni ɔltrasɔund: Dis na di we aw dɛn kin yuz mɔ, we nɔ kin mek pɔsin fil pen.
• di כltra saund bifo di bכn: dis de εp fכ no if di pikin we de insay di bכdi gεt PKD.
• CT scan (computed tomography scan): Dis kin mek yu si klia wan di kidni ɛn blad.
• MRI (magnetic resonance imaging): Dis kin ɛp bak fɔ gɛt ditayla pikchɔ dɛn bɔt di kidni dɛn.

Apat frɔm dat, di dɔktɔDɛn kin se bak fɔ tɛst di jɛnɛtiks. dis tεst kin chεk fכ di prεsεns fכ di mutated jin we de mek PKD insay bכdi כ saliva sεmpl. I kin kɔnfɔm bak us kayn PKD yu gɛt.

Wetin na di tritmɛnt dɛm fɔ PKD?

Infakt, no mɛrɛsin nɔ de fɔ PKD yet. Di tritmɛnt dɛn kin mɔs fɔ mek di sik slo, fɔ kɔntrol di sayn dɛm, ɛn fɔ mek i nɔ gɛt prɔblɛm. Di men tritmɛnt fɔ PKD na:

• Blɔd prɛshɔn mɛnejɛmɛnt: Di ay blɔd prɛshɔn na wan big ɛnimi fɔ PKD. So yu dɔktɔ go ɛp yu fɔ kɔntrol yu blɔd prɛshɔn wit mɛrɛsin, it fayn it we nɔ gɛt sɔl, ɛn ɛksesaiz. If yu kip yu blɔd prɛshɔn na say we sef, dat kin mek yu nɔ gɛt siriɔs sik lɛk at sik ɛn strok.
• Sכpכt fכ brith: Bebi dεm we gεt ARPKD, we in lכng dεm nכ de divεlכp gud gud wan, εn we i at fכ brith kin nid fכ sכpכt wit mεkanikal ventilεta .
• Dayalaysis: If yu kidni dεm de fεl εn dεn nכ ebul fכ du dεn wok igen, yu kin nid fכ du ``Dayalysis'' (na wan prכsεs fכ artificially purifying yu bכdi). insay dis prכsεs, wan mashin we dεn kכl ``Hemodialysis'' de filta yu bכdi na do na yu bכdi. insay ``Peritoneal dialysis'' de filta yu bכdi yuz spεshal wata εn wan mεmbran we dεn kכl di pεritoneum we de layn yu bכdi.
• Grɔw tɛrapi: Bebi dɛn we gɛt ARPKD we nɔ gɛt bɛtɛ wet ɛn we nɔ de gro fayn kin nid ɛp fɔ gro. Dɔktɔ kin tɛl yu fɔ gi yu spɛshal tritmɛnt fɔ it ɔ fɔ yuz ɔmon fɔ mek yu gro .
• Kidni transplant: If ADPKD go bifo te yu kidni nɔ wok , yu kin nid fɔ transplant kidni . Transplant na ɔpreshɔn we dɛn kin pul di kidni we nɔ de wok fayn ɛn put wɛlbɔdi kidni frɔm pɔsin we gi am.
• aw fɔ mɛn di pen: Dɛn kin yuz mɛrɛsin fɔ mɛn di pen we pɔsin kin gɛt we i gɛt infɛkshɔn, kidni ston, ɔ sist we kin bɔs bikɔs ɔf PKD. Bɔt ɛni mɛrɛsin we yu go tek fɔ mɛn pen fɔ bi di wan dɛn we yu dɔktɔ dɔn gri fɔ . Sɔm pen kil (espɛshali NSAID) kin mek di kidni pwɛl mɔ ɛn mɔ.

Wetin na di layf we pɔsin we gɛt PKD kin liv?

Yu kin fil fɔ fred smɔl we yu yɛri dis, bɔt i impɔtant fɔ no di tru.

If pipul dɛm wae gɛt ADPKD gɛt di rayt tritmɛnt, de manej di sik fayn fayn wan, ɛn fala wɛl bɔdi layf, .Yu kin liv lɔng ɛn ful layf. Na lɛk af pan di pipul dɛm we gɛt ADPKD go gɛt kidni failure we dɛn ol 70 ia ɛn dɛn go nid fɔ dayalysis ɔ fɔ transplant kidni .

Bɔt di prɔgnosis fɔ pikin dɛn we gɛt ARPKD nɔ so gud. Na lɛk wan pat pan tri pikin dɛn we dɛn bɔn wit ARPKD, mɔ di wan dɛn we gɛt siriɔs prɔblɛm wit di we aw dɛn de blo, kin day we dɛn smɔl. Bɔku tɛm, bebi dɛn we de liv kin nid mɛrɛsin ɛn spɛshal kia ɔlsay na dɛn layf. lεk af pan di pikin dεm we de liv pas dεn bεlε kin gεt kidni fεil bitwin 15 εn 20 ia.

Yu tink se dɛn kin ebul fɔ stɔp PKD?

Bɔt i sɔri fɔ no se PKD na sik we pɔsin kin gɛt frɔm in jɛnɛtiks, so dɛn nɔ kin ebul fɔ avɔyd am kpatakpata . Bɔt if yu fala wɛlbɔdi layf, kɔntrol blɔd prɛshɔn, ɛn tek tɛm fala di dɔktɔ dɛn advays, yu kin slo fɔ mek di sik nɔ go bifo ɔ yu kin delay fɔ mek yu gɛt prɔblɛm dɛn lɛk we yu kidni nɔ de wok fayn.

I rili impɔtant fɔ mek pipul dɛn we gɛt PKD we de plan fɔ bɔn pikin dɛn tɔk to wan jenɛtik kɔlnɔ so dat dɛn go no bɔt di risk we dɛn pikin dɛn kin gɛt fɔ gɛt di sik ɛn wetin dɛn kin du fɔ mek dɛn nɔ gɛt am.

Wetin a kin du fɔ mek i izi fɔ liv wit PKD?

Fɔ liv wit PKD kin tranga, bɔt if yu fala wɛl bɔdi layf ɛn no bɔt di sik, yu kin mek di joyn izi. Na sɔm advays dɛn ya we go ɛp yu:

• It tin we fayn fɔ yu kidni . Dis fɔ pe atɛnshɔn pan it dɛn we nɔ gɛt bɔku sɔl, potashɔm, ɛn fɔsfɔr. Gɛt patikyula advays frɔm yu dɔktɔ ɔ pɔsin we sabi bɔt it.
• Du ɛksesaiz we go fayn fɔ yu, fɔ at le 30 minit insay di de, bɔku pan di de dɛn insay di wik.
• Mek yu gɛt wɛlbɔdi bɔdi wet.
• Chek yu blɔd prɛshɔn ɔltɛm ɛn kɔntrol am akɔdin to yu dɔktɔ in instrɔkshɔn.
• If yu de smok ɔ yu de yuz ɔda tin dɛn we dɛn kin yuz fɔ smok, stɔp wantɛm wantɛm.
• Nɔ drink rɔm as yu ebul.
• Fɛn we fɔ ridyus strɛs. Tin dɛn lɛk fɔ tink gud wan ɛn yoga kin ɛp.
• Drink bɔku wata ɛn drink dɛn we nɔ gɛt kafinɛ (lɛs ti, kɔfi) ɔl di de. Bɔt if yu nid fɔ stɔp fɔ drink wata pan ɛni stej we yu gɛt di sik na yu kidni, fala yu dɔktɔ in advays.
• Gɛt at le sɛvin awa gud slip ɛvri nɛt.
• Tek ɔl di mɛrɛsin dɛn we yu dɔktɔ gi yu di rayt we, di rayt tɛm, ɛn di we aw dɛn fɔ tek am. Nɔ stɔp fɔ tek ɛni mɛrɛsin we yu nɔ gɛt dɔktɔ advays.

Ustɛm yu fɔ go to dɔktɔ bɔt PKD?

If yu gɛt PKD, yu fɔ dɔn de ɔnda dɔktɔ in sɔpɔtishɔn. Bɔt if yu gɛt ɛni wan pan dɛn sik ya wantɛm wantɛm , go to dɔktɔ ɔ go na ɔspitul wantɛm wantɛm :

• If yu leg, yu ankles, ɔ yu fut dɛn swel wantɛm wantɛm (dɛn kin kɔl dis ɛdima) .
• If yu gɛt siriɔs pen na yu chɛst ɔ yu fil se yu chɛst tayt
• If yu gɛt prɔblɛm fɔ blo wantɛm wantɛm
• If yu nɔ ebul fɔ pis
• If blɔd de kɔmɔt pasmak wit di urine
• If yu gɛt siriɔs ed pen ɔ yu de si chenj

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

Na nɔmal tin fɔ gɛt bɔku kwɛstyɔn bɔt dis sik. Nɔ fred fɔ aks yu dɔktɔ kwɛstyɔn dɛn lɛk:

• Us kayn PKD a gɛt? (ADPKD ɔ ARPKD?)
• Wetin na di risk fɔ mek mi pikin dɛn gɛt dis sik frɔm mi?
• A nid fɔ du ɛni ɔda spɛshal tɛst?
• Us tritmɛnt we bɛtɛ fɔ mi?
• Us chenj dɛn a fɔ mek na mi it, mɔ we i kam pan sɔl, potashɔm, ɛn fɔsfɔr?
• A nid fɔ mek ɛni chenj na mi layf (ɛksɛsayz, slip, ɛn ɔda tin dɛn)?
• A go nid fɔ gɛt dayalaysis ɔ fɔ transplant mi kidni tumara bambay?
• Us sayd ɛfɛkt ɔ kɔmplikeshɔn dɛn a fɔ no mɔ bɔt?
• Wetin na di sayd ɛfɛkt dɛm fɔ di mɛrɛsin dɛm we a de tek?

Fɔ dɔn, wetin fɔ mɛmba (Take-Home Message) .

Yu no naw se Polycystic Kidney Disease (PKD) na wan jεnεtik kכndyushכn we de mek sist fכm na di kidni dεm. Dɛn sist ya kin mek di kidni dɛn big ɛn ambɔg dɛn wok. Bɔrku tɛm i kin afɛkt big pipul dɛm, bɔt nɔr kin bɔrku, wan denja kayn PKD kin kam pan pikin dɛm.

Pan ɔl we no mɛrɛsin nɔ de fɔ PKD, nɔ wɔri. If yu de kɔntrol yu sik dɛn fayn fayn wan, fala yu dɔktɔ in advays, ɛn liv fayn layf, yu go ebul fɔ liv fayn wit di sik. Di tin we impɔtant pas ɔl na fɔ wok togɛda wit yu dɔktɔ ɛn gɛt di tɛst ɛn tritmɛnt dɛn we yu nid. Nɔto yu wan de, ɛn dɔktɔ dɛn, fambul dɛn, ɛn padi dɛn de we go ɛp yu fɔ du dis waka.

` Polisistik Kidni Disiz, PKD, kidni sik, kidni sist, jenɛtik sik, ADPKD, ARPKD