Bɔku tɛm yu kin fil diziz fɔ natin? Yu kin fil se yu taya bad bad wan? Yu kin it we yu nɔ ebul fɔ bia, mɔ afta yu dɔn was yu wam wam? Yu de yɛri wan ring na yu yes? Bɔku tɛm wi kin tink se dɛn tin ya na nɔmal tin ɛn wi nɔ kin pe atɛnshɔn to dɛn. Bɔt sɔntɛnde, biɛn dɛn smɔl smɔl sik ya, wan tin kin de we wi nɔ yɛri bɔku bɔt ɛn we wi fɔ wɔri bɔt. Tide wi go tɔk bɔt wan pan dɛn kayn sik dɛn de. Dat na Polycythemia Vera , ɔ PV fɔ shɔt tɛm.
Fɔ tɔk am simpul wan, wetin na polycythemia vera (PV)?
Fɔ tɔk am simpul wan, polycythemia vera (PV) na wan sik we de ambɔg blɔd na wi bɔdi. I kin mek wi bɔdi mek bɔku bɔku rɛd blɔd sɛl dɛn . Naw yu kin de tink se, "Rɛd blɔd sɛl dɛn fayn fɔ di bɔdi, so wetin kin apin we wi mek bɔku bɔku wan?" Na dat na di prɔblɛm.
Imajin se wan rod de we kin kɛr wan patikyula nɔmba pan motoka dɛn. Wetin go apin if yu put wan tawzin tɛm mɔ motoka dɛn na da rod de pas aw i go ebul fɔ kɛr? Dɛn go blok di wan ol rod, ɛn di motoka dɛn nɔ go ebul fɔ muf, nɔto so? Na dat kin apin insay wi blɔd vesel dɛn. We rɛd blɔd sɛl dɛn bɔku, wi blɔd kin tik . Jɔs lɛk aw sɔntin we fɔ bi wata de tik lɛk ɔni.
Dis tik we di blɔd tik kin mek di blɔd flɔ sloslo. Dis kin mek di blɔd klɔt mɔ ɛn mɔ . If dis blɔd klɔt travul go na di at, i kin mek pɔsin gɛt at atak, ɛn if i travul go na di bren, i kin mek i gɛt strok. Nɔto dat nɔmɔ, bɔt i kin mek yu gɛt sayn dɛn bak we de mek yu vɛks lɛk fɔ it ɔltɛm, fɔ ring na yu yes, fɔ fil pen na yu bɛlɛ, fɔ blɔd na yu nos, ɛn fɔ mek yu nɔ si fayn.
De impɔtant tin na dat dis na sik wae nɔr de mɛn, wae de teik yu layf, wae nɔr kin ebul fɔ wɛl ɔl. Bɔt nɔ wɔri! If yu gɛt di rayt mɛrɛsin, yu kin kɔntrol dɛn sik ya, ridyus di prɔblɛm dɛn we yu kin gɛt, ɛn liv nɔmal layf.
Yu tink se dis rili kansa? A fɔ wɔri?
Dis kwɛstyɔn na sɔntin we bɔku pipul dɛn gɛt. Yɛs, polycythemia vera na wan kayn blɔd kansa. Na mɛrɛsin, wi kin kɔl am Myeloproliferative Neoplasm (MPN) .
Naw, we wi yɛri di wɔd "kansa," wi kin fred bad bad wan. Dat na nɔmal tin. Bɔt wi nid fɔ ɔndastand se nɔto ɔl di kansa dɛn na di sem. Sɔm dɛn kin gro kwik kwik wan ɛn dɛn kin fɛt. Bɔt PV na wan kayn kansa we de gro sloslo . Dat min se i nɔ kin gɛt agresiv wan tɛm. Bɔrku tɛm, dɛn kin no dis sik afta dɛn dɔn ol 60 ia.
Bifo yu day wit dis sik insɛf, di risk kin bɔku frɔm prɔblɛm dɛn lɛk at atak ɛn strok we blɔd kin klɔt, we wi bin dɔn tɔk bɔt. Dɔn bak, na smɔl tɛm nɔmɔ dis sik kin tɔn to ɔda siriɔs blɔd kansa. Bɔt dat kin apin to wan rili smɔl pasɛnt. So, pan ɔl we dɛn kɔl am "kansa," dis na sik we dɛn kin manej fayn fayn wan wit di rayt tritmɛnt.
Aw dis sik kin afɛkt wi bɔdi ɛn wetin na de risk?
Lɛ wi si naw aw dis rɛd blɔd sɛl dɛn we de bɔku kin afɛkt difrɛn pat dɛn na wi bɔdi.
- Blɔd we de rɔtin: Dis na di men prɔblɛm. We blɔd kin klɔt, di at kin gɛt fɔ wok tranga wan fɔ pɔmp blɔd. Dɔn bak, di blɔd we de pas na di bɔdi in smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl. Dis min se wi ɔgan ɛn tisu dɛn nɔ kin gɛt bɔku ɔksijɛn .
- Spleen Ɔva Wok: Wan pan di wok we wi bɔdi in ɔgan we dɛn kɔl splin de du na fɔ filta di ol blɔd sɛl dɛn we dɔn pwɛl. Naw, we dɛn de mek bɔku bɔku rɛd blɔd sɛl dɛn, di splin kin lod pasmak. I tan lɛk se yu de tray fɔ filta bɔku dɔti tru wan filta ɛn i kin klos. Dis kin mek di splin swel. Wi kin kɔl am splenomegaly . Dɔn yu kin fil ebi ɛn pen na di lɛft say na yu bɛlɛ.
Lɛ wi luk di tebul we de dɔŋ fɔ si wetin di men risk ɛn kɔmplikeshɔn dɛm fɔ dis PV kɔndishɔn kin bi.
| Risk/Kɔmplikeshɔn | Fɔ ɛksplen am simpul wan |
|---|---|
| Blɔd we De Klɔt | Dis na di men ɛn di prɔblɛm we kin apin wantɛm wantɛm . If blɔd klɔt travul go na di bren, i kin mek pɔsin gɛt strok, if i travul go na di at, i kin mek pɔsin gɛt at atak, ɛn if i stɔp na di lɔng, i kin mek pɔsin gɛt pulmonary embolism. |
| Sɛkɔndari Kɔndishɔn dɛn | We dɛn brok di rɛd blɔd sɛl dɛn tumɔs , di yurik asid we de na di bɔdi kin go ɔp. Dis kin mek yu jɔyn pen lɛk gaut ɛn kidni ston. I kin mek bak di bɛlɛ asid bɔku ɛn mek yu bɛlɛ ɔlsa. |
| Transfɔmeshɔn to ɔda blɔd kansa | Dis nɔ kin apin so ɔltɛm. pan sɔm pipul dɛm (smɔl pasɛnt), as tɛm de go dis sik kin bi siriɔs blɔd kansa lɛk maylofibrosis ɔ, we nɔ kin apin so ɔltɛm, akyu mayloid lukimiya (AML). |
Wetin na di kes dɛm fɔ dis sik?
PV kin divεlכp sloslo ova sכm stej dεm.
1. Early PV: Na dis stej, bɔrku pipul nɔr kin gɛt ɛni sayn at ɔl . Ɔ dɛn kin jɔs gɛt sɔm kayn sayn dɛn we nɔ kin rili at fɔ si, lɛk fɔ tɔn diziz ɛn taya. Sɔntɛnde, dɛn kin no am bay we dɛn du blɔd tɛst fɔ ɔda sik.
2. Advancing PV: Di simptom dεm de inkrεs sכmtεm as tεm de go. di simptom dεm lεk it, we yu de lכs wet, εn we yu bכdi nכ de fil fayn bikoz fכ di spεlin we big kin apin insay dis stej.
3. Di las stej ("Spent Phase"): Dis na likl mo komplikayt. Afta bɔku ia, di nɔmal sɛl dɛn we mek di sik kin skata ɔlsay na wi bon mɛrɔ, ɛn dɛn kin pwɛl di bon mɛrɔ. Di bon mɛro tan lɛk di faktri usay dɛn de mek wi blɔd sɛl dɛn. We dis faktri pwɛl, ska tisu kin fɔm insay. Dɔn, dɛn nɔ go ebul fɔ mek blɔd sɛl dɛn we gɛt wɛlbɔdi. I sɔprayz fɔ no se di sik we bigin wit bɔku bɔku rɛd blɔd sɛl dɛn kin mek pɔsin gɛt wan sik we nɔ gɛt bɛtɛ rɛd blɔd sɛl dɛn, we na anemia .
Wetin na di sayn dɛm wae dɛn kin no?
Bɔrku tɛm, di sayn dɛm fɔ PV kin kam sloslo as tɛm de go. Sɔm pipul kin go fɔ lɔng lɔng tɛm ɛn nɔr kin gɛt ɛni sayn. Lɛ wi tek wan luk pan wetin na dɛn sayn ya.
| Tayp we gɛt kwaliti dɛn | Ɛgzampul dɛn |
|---|---|
| Kɔmɔn tin dɛn we kin kɔmɔt fɔs | |
| Prɔblɛm dɛn we kin apin | Ed pen, diziz, taya pasmak, ay blɔd prɛshɔn, yu nɔ de si fayn. |
| Speshal tin dɛn we kin apin leta | |
| Skin kin chenj | Di an ɛn fut dɛn kin it bad bad wan, rɛd, ɛn inflamɛns, mɔ afta yu dɔn was insay ɔt wata . |
| Ɔda tin dɛn we de apin | Fɔ swet pasmak na nɛt, i nɔ kin izi fɔ blo (espɛshali we yu ledɔm), blɔd we de kɔmɔt na yu nos ɛn blɔd na yu gɔm, ɛn we yu nɔ gɛt ɛni ɛksplen. |
| Simptom dɛm wae kin apun wit kɔmplikeshɔn dɛm | |
| Splenomegaly we gɛt di sik | Pen na di ɔp lɛft pat na di bɛlɛ, blo, fil ful ivin afta yu it smɔl. |
| Blɔd we de klɔt (DVT) . | Swel, rɛd, pen na yu an ɔ yu leg. |
| Gout we pɔsin kin gɛt | Bɔrku pen ɛn swel na di jɔyn dɛm, mɔ di big tɔ. |
Wetin mek dis de apin? Wetin na di rizin?
di men rizin fכ dis na di jin mכtεshכn na wan stεm sεl na wi bon mכro. I tan lɛk se wan layn fɔ kɔd na kɔmpyuta program nɔ go fayn. Dɔn di wan ol program kin go haywire.
Jin dɛn de we de tɛl wi blɔd sɛl dɛn fɔ gro. mכr dan 90% pan di PV pasεnshכn dεm gεt mכtεshכn insay wan jin we dεn kכl JAK2 . biכs fכ dis fכlt instrכkshכn, di bon mכro gεt di kכmand, "Kכntinyu fכ mek rεd bכdi sεl dεm, nכ stכp." So dɛn kin mek rɛd blɔd sɛl dɛn we dɛn nɔ ebul fɔ kɔntrol.
Impɔtant tin na dat, dis jɛnɛtik muteshɔn nɔ kin gɛt bɔku tɛm . Dat min se, i nɔ de pas frɔm mama to papa. Dis mכtεshכn kin apin we i de liv, fכ sכm rizin we wi nכ no.
Aw dɔktɔ kin no kɔrɛkt wan bɔt dis sik?
If yu gɛt dɛn sik ya, yu dɔktɔ go aks yu fɔs bɔt yu sik. Dɔn dɛn go du sɔm tɛst fɔ no if dɛn dɔn no di sik. Di Wol Ɛlth Ɔganayzeshɔn (WHO) se dɛn fɔ mit tri tin dɛn fɔ no if pɔsin gɛt PV.
1. Blɔd Tɛst: Dis na di fɔs ɛn impɔtant tɛst. I de chɛk fɔ si if yu rɛd blɔd sɛl dɛn tu bɔku.
- Di ɛmoglobin lɛvɛl we bɔku.
- di εmatokrit (di pasεnshכn fכ di rεd sεl dεm na di bכdi).
.
3. Jεnεtik tεst כ di כmon lεvεl dεm:
- wan jεnεtik tεst dεn de du fכ chεk fכ di JAK2 jin mכtεshכn .
- Ɔ, dɛn kin luk di lɛvɛl we wan ɔmon we dɛn kɔl erythropoietin (EPO), we di kidni dɛn kin mek. Dis ɔmon de gi sayn to di bon mɛro fɔ mek rɛd blɔd sɛl dɛn. insay PV, di bכdi de stכp fכ mek dis כmon biכs dεn de mek rεd bכdi sεl dεm fכ dεn wan. Dis dɔn mek di EPO lɛvɛl dɛn rili smɔl.
Wetin na di tritmɛnt dɛm fɔ dis?
Tu men gol de fɔ trit PV. Wan na fɔ ridyus di risk fɔ mek blɔd klɔt, ɛn di ɔda wan na fɔ kɔntrol di sik dɛn we de mɔna yu.
- Phlebotomy - Fɔ pul blɔd: Dis na di tritmɛnt we dɛn kin yuz mɔ ɛn we simpul pas ɔl. Jɔs lɛk aw yu de gi blɔd, dɛn kin pul smɔl blɔd (bɔku tɛm na lɛk wan pint) na yu bɔdi ɔltɛm . Dis kin mek yu blɔd nɔ bɔku ɛn di rɛd blɔd sɛl dɛn nɔ bɔku.
- Aspirin we nɔ bɔku: Yu dɔktɔ go se yu fɔ tek wan pil we nɔ gɛt bɔku aspirin ɛvride fɔ mek yu blɔd nɔ klɔt. Bɔt dis nɔ kin fayn if yu gɛt prɔblɛm dɛn lɛk ɔlsa na yu bɛlɛ.
- Drug dɛn we de ridyus rɛd blɔd sɛl: If di sik bad ɔ if di blɔd transfyushɔn nɔmɔ nɔ go du fɔ dɛn, dɛn kin gi dɛn drɔgs we de ridyus di rɛd blɔd sɛl. Sɔm ɛgzampul dɛn na haydroksiyuria ɛn intafɛrɔn alfa .
- Tritmɛnt fɔ it: Dɛn kin gi yu antihistamin ɔ ɔda patikyula mɛrɛsin fɔ kɔntrol di it we yu de it bad bad wan.
Yu dɔktɔ go disayd uswan pan dɛn tritmɛnt ya go fayn fɔ yu, so mek shɔ se yu go fɛn tritmɛnt jɔs lɛk aw yu dɔktɔ tɛl yu.
Aw a go liv fayn wit dis sik?
Wae yu no se yu gɛt dis sik, bɔrku tin de wae yu kin du fɔ liv wit am.
- Si yu dɔktɔ ɔltɛm: Go na klinik dɛn di rayt tɛm, mek dɛn du blɔd tɛst. I rili impɔtant fɔ mek yu dɔktɔ wach yu kɔndishɔn.
- Ɛksesaiz: If yu du ɛksesaiz smɔl, dat kin ɛp fɔ mek yu blɔd go fayn fayn wan.
- Nɔ smok: If yu smok, i kin mek di blɔd vesel dɛn smɔl, ɛn dis kin mek di blɔd klɔt mɔ ɛn mɔ.
- Avɔyd say dɛn we ɔksijɛn nɔ bɔku: Ay ples dɛn lɛk mawnten dɛn we gɛt ɔksijɛn nɔ bɔku. Nɔ go na dɛn kayn ples dɛn de.
- Kɔntrol blɔd prɛshɔn: If yu kɔntinyu fɔ gɛt wɛl bɔdi wet, dat kin ɛp fɔ kɔntrol blɔd prɛshɔn.
- Drink bɔku wata: If yu nɔ gɛt wata na yu bɔdi, dat kin mek yu blɔd klɔt mɔ. So, drink bɔku wata ɔl di de.
Pan ɔl we PV na kansa, bɔku pipul dɛn kin liv fayn fɔ bɔku bɔku ia afta dɛn dɔn no se dɛn gɛt dis sik. Di big trɛt na di prɔblɛm dɛn we kin kam frɔm di blɔd we kin klɔt, pas di kansa insɛf. So, fɔ kɔntinyu fɔ gɛt padi biznɛs wit yu dɔktɔ ɔltɛm ɛn fɔ liv fayn layf, impɔtant jɔs lɛk aw fɔ trit dis sik wit mɛrɛsin.
Mɛsej we dɛn kin kɛr go na os
- Polycythemia vera (PV) na wan blɔd kansa we de gro sloslo we de mek di bɔdi mek tumɔs rɛd blɔd sɛl dɛn.
- Nɔ fred di wɔd "kansa." If yu gɛt di rayt tritmɛnt ɛn manej yu, yu kin liv wɛl bɔdi fɔ bɔku bɔku ia.
- Di men tin ɛn di tin we kin mek pɔsin gɛt dis sik wantɛm wantɛm na we di blɔd kin klɔt, we kin mek di blɔd tik. Dis kin mek yu gɛt at atak ɛn strok.
- Di kɔmɔn sayn dɛm na fɔ it bad bad wan, fɔ gɛt ed pen ɔltɛm, ɛn fɔ gɛt diziz afta yu dɔn was insay ɔt wata.
- Di tritmɛnt inklud fɔ pul blɔd (flebotomy) ɔltɛm ɛn fɔ tek mɛrɛsin fɔ mek blɔd nɔ klɔt.
- I impɔtant fɔ de tɔk to yu dɔktɔ ɔltɛm ɛn gɛt di rayt tɛst ɛn tritmɛnt dɛn.
- Fɔ avɔyd fɔ smok, fɔ du ɛksɛsayz, ɛn fɔ liv fayn layf na tin we rili impɔtant fɔ kɔntrol di sik.
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