Yu kin fil taya ɛn taya ɔltɛm fɔ natin? Yu gɛt brus ɔlsay na yu bɔdi? Yu kin fil se yu gɛt smɔl smɔl bɔdi ɔ yu kin fil se yu ful-ɔp na di lɛft say na yu bɛlɛ? Sɔntɛm wan siriɔs rizin de biɛn dɛn tin ya we wi nɔ de tink bɔt. Dat na wan sik we dɛn kɔl maylofibrosis. Nɔ fred we yu yɛri dis nem. Wi go tɔk bɔt wetin i bi, wetin mek i kin apin, wetin na di sayn dɛm, ɛn wetin na di tritmɛnt dɛm na wan rili simpul we we yu go ɔndastand.
Fɔ tɔk am simpul wan, wetin na maylofibrosis?
Tink bɔt di big big bon dɛn we de insay wi bɔdi as faktri dɛn we de mek blɔd. Wi kin kɔl dɛn faktri ya bon mɛro . Na insay dis bon mכro de mek כl di tri kayn blכd sεl dεm we implεnt fכ wi bכdi.
1. Rɛd Blɔd Sɛl dɛn: Dɛn kin kɛr ɔksijɛn ɔlsay na di bɔdi.
2. Wait Blɔd Sɛl: I de fɛt sik ɛn jem.
3. Plɛtlɛt: Dɛn kin mek blɔd klot ɛn stɔp fɔ blɔd.
Maylofibrosis na wan kayn blɔd kansa we nɔ kin apin so ɔltɛm we di bon mɛro, we na di faktri we de mek blɔd, kin ful-ɔp wit ska tisu smɔl smɔl. Jɔs lɛk aw gras kin tek ova wan fayn fil smɔl smɔl, dis ska tisu kin mek di bon mɛro nɔ mek blɔd sɛl dɛn nɔmal wan.
Bikɔs dɛn nɔ de du dis wok fayn, wi splin , we na di ɔgan we de ɔp di lɛft say na di bɛlɛ, de tray fɔ ɛp fɔ du dis wok. Dat min se di splin kin bigin fɔ mek blɔd. Bɔt nɔto dat na in men wok. Bikɔs ɔf dis, di splin kin lod pasmak, ɛn smɔl smɔl i kin bigin fɔ big ɛn swel. Bɔrku pasɛnt kin gɛt sɔm kayn sik wit dis swɛlin na dɛn splin.
Dis kin bi sik wae de kam wae yu de liv yu layf, bɔrku tɛm i kin go bifo smɔl smɔl. Bɔt sɔmtɛm, i kin wɔs kwik kwik wan, ɛn pan sɔm pipul dɛn i kin go bifo to akyu lukimiya. Na dat mek yu dɔktɔ go de wach yu gud gud wan afta dɛn dɔn no se yu gɛt di sik.
Yu tink se men kayn maylofibrosis de?
Yɛs, tu men kayn tin dɛn de fɔ dis.
- Praymari Maylofibrosis: Dis na di kayn we we dɛn kin gɛt mɔ. I kin apin fɔ insɛf, ɛn i nɔ kin gɛt ɛni ɔda sik.
- Sɛkɔndari Maylofibrosis: .Dis kin apin we ɔda tin dɛn we gɛt fɔ du wit blɔd kin rili bad. Fɔ ɛgzampul, pɔsin we gɛt Essential Thrombocythemia ɔ Polycythemia Vera kin gɛt myelofibrosis as tɛm de go. Ɔl dɛn sik ya de pan wan grup we gɛt blɔd kansa we dɛn kɔl Myeloproliferative Neoplasms (MPNs). Fɔ tɔk am simpul wan, ɔl dɛn sik ya kin mek di bon mɛro mek bɔku wan ɔ mɔ kayn blɔd sɛl pas aw i fɔ mek.
Wetin na di sayn dɛm fɔ dis sik? Aw wi go no?
Bɔrku tɛm, dis sik kin kam kwik kwik wan. So, e kin go fɔ lɔng lɔng tɛm ɛn nɔr kin sho ɛni sayn. We di sayn dɛn bigin fɔ sho, di fɔs tin we kin kam na yu maynd na we yu taya pasmak . Dis kin bi bikɔs di rɛd blɔd sɛl dɛn nɔ de na di bɔdi, we na anemia. Along wit dis, bikɔs ɔf di splin we dɔn big, yu kin fil ebi, pen, ɔ fil fɔ ful na di ɔp lɛft pat na di bɛlɛ.
Lɛ wi si us ɔda sayn dɛn de na di tebul we de dɔŋ ya.
| Di sayn we de sho se di sik de | Wan simpul ɛksplen |
|---|---|
| Bon ɛn jɔyn pen | pen we de kכmכt frכm insay di bon dεm bikoz fכ chenj dεm na di bon mכro. |
| I izi fɔ mek yu brus ɔ blɔd | Bikɔs di pletlɛt dɛn de go dɔŋ, ivin smɔl bɔmp kin mek yu brus ɛn blɔd. |
| Liva we dɔn big | Lɛk di splin, di liva kin swel we i de tray fɔ mek blɔd. |
| Fiva | Fɔ fil wam fɔ natin. |
| Infekshɔn dɛn we kin kam bɔku tɛm | Sik dɛn kin skata izi wan bikɔs di wayt blɔd sɛl dɛn na di bɔdi we de wok lɛk in bɔdi in difens sɛl dɛn kin ridyus. |
| Fɔ fil ful ivin afta yu dɔn it smɔl | Bikɔs di splin dɔn swel ɛn di bɛlɛ dɔn opin, ivin afta yu it smɔl rays, di bɛlɛ kin fil ful. |
| Skin we de it | Sɔntɛm i kin it bad bad wan ɔlsay na di bɔdi. |
| Fɔ swet pasmak na nɛt | Swet so na nɛt dat di sheet dɛn kin wet. |
| We yu de lɔs yu wet fɔ natin | If yu lɔs yu wet we yu nɔ tray. |
Wetin mek dis kin apin? Wetin na di rizin dɛn?
Dɔktɔ dɛn stil nɔ no di rayt tin we kin mek pɔsin gɛt praymari maylofibrosis, bɔt dɛn ɔndastand gud gud wan aw i kin apin.
I kin bigin wit wan chenj we de apin na wan jin we de na di stem sɛl, we na di fɔs sɛl we de mek blɔd na di bon mɛro . Di sɛl we gɛt di jin we nɔ fayn kin bi kansa sɛl, we kin sheb kwik kwik wan ɛn mek kɔpi fɔ insɛf. Dɛn kansa sɛl dɛn ya kin ful-ɔp di wan ol bon mɛrɔ.
Dɛn bad sɛl ya nɔ jɔs de sidɔm de. di kεmikכl dεm we dεn de pul de pwεl di bon mכro εn di ska tisu de bigin fכ fכm. Dɛn kɔl dis fibrosis.
Dɔktɔ dɛn dɔn kam fɔ no se bɔku pipul dɛn we gɛt dis sik kin gɛt sɔm kɔmɔn tin dɛn we kin chenj na dɛn jin. Di tin dɛn we impɔtant pas ɔl na:
- JAK2 (JƐK-TU) .
- CALR (Kal-R) ɛn di .
- MPL we dɛn kɔl MPL
dis jεnεtik mכtεshכn dεm na dεn de mek dis dizכrd na di bon mכro.
Udat dɛn kin gɛt dis sik?
Pan ɔl we ɛnibɔdi kin gɛt dis sik, sɔm pipul dɛn kin gɛt dis sik pasmak.
- Ɔva 60 ia: Dɛn kin no dis sik mɔr pan pipul dɛm wae dɔn ol.
- Prɛzɛns fɔ ɔda blɔd sik dɛn:Fɔ di wan dɛn we gɛt sik lɛk `Essential Thrombocytosis` ɔ `Polycythemia Vera`, we wi bin dɔn tɔk bɔt bifo tɛm.
- Ekspos to ionizing radiation: Ekspos to ay dos of redyushɔn. (Dis na tin we nɔ kin apin so ɔltɛm).
- Fɔ gɛt sɔm kemikal dɛn: Fɔ lɔng tɛm we pɔsin de pan di kemikal dɛn we dɛn kin yuz na faktri, lɛk bɛnzin (dis bak nɔ kin apin so ɔltɛm).
Wetin na de kɔmplikeshɔn wae kin kam bikɔs ɔf de sik?
As maylofibrosis de go bifo, difrɛn kɔmplikɛshɔn dɛn kin apin.
Di blɔd sɛl dɛn we dɛn de mek nɔ bɔku
We di ska tisu dɛn gɛda na di bon mɛro, i nɔ kin ebul fɔ mek blɔd sɛl dɛn we gɛt wɛlbɔdi. Dis kin mek di rɛd blɔd sɛl dɛn go dɔŋ, ɛn dis kin mek di blɔd nɔ gɛt bɛtɛ blɔd , ɛn di pletlɛt dɛn kin go dɔŋ, ɛn dis kin mek di blɔd kɔmɔt mɔ ɛn mɔ.
fכmeshכn fכ εkstra hεpatik bכdi sεl dεm frכm di bon mכro
we di bon mכro nכ ebul fכ du in wok, כgan dεm lεk di splin εn di liva kin bigin fכ mek bכdi. Dis kin mek dɛn ɔgan dɛn de swel ɛn afɛkt di we aw dɛn de wok.
Ay Blɔd Prɛshɔn na Pɔtal Vein
di pכtal vein na di men bכdi we de kכri bכdi frכm di splin to di liva. di splin we big kin mek di blɔd nɔ flɔ tru dis vein, ɛn dis kin mek di prɛshɔn we de insay am go ɔp. Dis kin mek yu gɛt siriɔs blɔd.
Fɔ tɔn to akyu lukimiya
pan sɔm sik pipul dɛm, maylofibrosis kin dɔn bi wan kayn lukimiya we rili siriɔs ɛn we kin skata kwik kwik wan we dɛn kɔl Acute Myeloid Leukemia (AML).
Aw dɔktɔ kin no kɔrɛkt wan bɔt dis sik?
Afta i dɔn lisin to yu sayn dɛm ɛn chɛk yu, di dɔktɔ go ɔda fɔ du sɔm tɛst fɔ no if yu gɛt di sik.
1. Blɔd Tɛst: Dɛn tin ya de chɛk if yu blɔd sɛl dɛn (rɛd, wayt, pletlɛt) nɔmal ɔ nɔmal. Dɛn kin chɛk bak if di blɔd sɛl dɛn shep nɔ fayn.
2. Imej Test: Dɛn kin du CT skan ɔ ɔltra saund skan fɔ si if yu splin ɔ liva dɔn big. MRI skan kin ɛp bak fɔ si if ɛni skata de na di bon mɛrɔ.
3. Bone Marrow Biopsy: Dis na di test we impɔtant pas ɔl fɔ kɔnfirm di sik. insay dis, dεn kin tek sכm sכm bon mכro, bכku tεm frכm di hip bon כ כda big bon, כnda layt anεsthεtik. dεn kin sεnd am to wan lab fכ no εksεkεkt כl di ska tisu de, if kεnsar sεl dεm de, εn if εni jεnεtik mכtεshכn de lεk di `JAK2` we wi bin tכk bכt bifo.
Bay di rizɔlt fɔ dɛn tɛst ya, yu dɔktɔ go no if yu sik de na di fɔs stej (prefibrotic) ɔ di advans stej (overt). Dɛn go asɛs yu risk lɛvɛl bak (lɔ, intamɛdiet, ɔ ay risk) bay yu simptom dɛm ɛn di kayn jenɛtik mutation. Dɛn kin plan di tritmɛnt bay dis risk lɛvɛl.
Wetin na di tritmɛnt dɛm fɔ dis?
Di tritmɛnt we dɛn kin gi kin dipen pan di risk lɛvɛl fɔ yu sik, aw yu sik kin tranga, yu ej, ɛn yu ɔl wɛl bɔdi.
De impɔtant tin na dat, pɔrsin wae nɔr gɛt bɔrku prɔblɛm ɛn nɔr gɛt ɛni sik , dɛn nɔr kin gi am ɛni mɛrɛsin fɔs. Bifo dat, di dɔktɔ go de wach yu ɔltɛm (Watchful Waiting).
Bɔku tritmɛnt dɛn de fɔ intamɛdiet ɛn ay risk kɔndishɔn. Di men gol fɔ tritmɛnt na fɔ kɔntrol di sayn dɛm ɛn fɔ mek di sik nɔ wɔs.
| Simptom/kɔndishɔn we dɛn de trit | Di we aw dɛn kin yuz di tritmɛnt |
|---|---|
| Fɔ di jenɛral simptom dɛm ɛn di splin we dɔn big | Tagεt tεrapi dεm we dεn kכl JAK inhibito dεm. Ɛgzampul dɛn: Ruksolitinib (Jakafi®), Fɛdratinib (Inrebic®), Pakritinib (Vonjo®), Momelotinib (Ojjaara®). Dɛn tin ya de ridyus di sayz fɔ di splin ɛn kɔntrol di sayn dɛm lɛk fɔ taya ɛn fɔ swet na nɛt. |
| Fɔ Anemia | - Drug dεm we de εp fכ mek rεd bכdi sεl dεm (e.g. Erythropoietin) . - Ɔda mɛrɛsin dɛn (Androgens, Immunomodulators, Corticosteroids) - Blɔd transfyushɔn if nid de |
| Fɔ wan splin we dɔn big (ɔda we dɛn) . | - Kemotɛrapi drɔgs - Rεdyushכn tεrapi to di splin - Dis nכ kin yus bכku. - Splenectomy - Dis na wan tin we nɔ kin apin so ɔltɛm ɛn we kin mek i gɛt prɔblɛm. |
Stem Sɛl Transplant we dɛn kin yuz
Dis na di wangren tritmɛnt we kin mɛn maylofibrosis kɔmplit wan . Bɔt na wan we we rili gɛt prɔblɛm wit siriɔs sayd ɛfɛkt dɛn. So, i nɔ fayn fɔ ɔl di wan dɛn we sik. Bɔku tɛm, dɔktɔ dɛn kin se dis tritmɛnt fɔ pipul dɛn we gɛt ay risk, yɔŋ pipul dɛn ɛn pipul dɛn we nɔ gɛt ɔda siriɔs sik.
Dis involv fɔ pwɛl di pɔsin in bon mɛrɔ we gɛt sik kpatakpata ɛn gi di pɔsin stem sɛl dɛn we dɛn gɛt frɔm pɔsin we gɛt wɛlbɔdi.
Mɛsej we dɛn kin kɛr go na os
- Maylofibrosis na blɔd kansa we de mek yu gɛt skata ɛn gro na di bon mɛrɔ. Pan ɔl we dis kin mek yu fred, nɔ panik.
- If yu gɛt sɔm sayn dɛn lɛk we yu taya pasmak we yu nɔ ebul fɔ ɛksplen, we yu bɛlɛ kin ebi, ɔ we yu kin brus izi wan, nɔ ignore dɛn ɛn go to dɔktɔ wantɛm wantɛm.
- Blɔd tɛst ɛn bon mɛro bayɔpsi impɔtant fɔ mek dɛn no di sik kɔrɛkt wan.
- If yu nid tritmɛnt ɔ nɔ nid tritmɛnt, ɛn us kayn tritmɛnt fɔ fayn, i go dipen pan di risk lɛvɛl fɔ yu sik ɛn yu sayn dɛm.
- Tɔk to yu dɔktɔ rili opin wan. Aks ɔl di tin dɛn we yu de fred, di tin dɛn we yu de dawt, ɛn di kwɛstyɔn dɛn we yu de aks. Yu fɔ no di bad tin dɛn we di tritmɛnt dɛn kin du.
- As mɛrɛsin sayɛns de go bifo, nyu tritmɛnt fɔ dis sik de kam ɔltɛm. So, fes tritmɛnt wit op ɛn pɔsitiv.
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