Bɔku tɛm yu pikin kin kɔmplen se in leg ɔ in an de at? Sɔntɛm wan brus we pɔsin kin gɛt we i fɔdɔm we i de ple nɔ kin go ivin afta sɔm mɔnt? Bɔku tɛm wi kin tink bɔt dɛn tin ya as smɔl injury ɔ sprain we pikin dɛn de du bad bad tin dɛn kin mek. Bɔt sɔntɛnde, wan sayn wae bigin fɔ simpul lɛk dis kin bi sayn fɔ sɔmtin wae siriɔs pasmak. Tide wi go tɔk bɔt wan kansa we nɔ kin bɔku, bɔt we impɔtant we wi ɔl fɔ no bɔt. Dat na Ewing Sarkoma.
Fɔ tɔk am simpul wan, wetin na Ewing Sarcoma?
Ewing sarcoma na wan kayn kansa we nɔ kin bɔku we kin kam na di bon dɛn ɔ di sɔft tisu dɛn we de rawnd dɛn . Sɔft tisu dɛn na wi mɔsul dɛn, di tɛndon dɛn, ɛn di ligamɛnt dɛn. Dɛn tumbu ya kin apin mɔ na say dɛn lɛk di hip, di rib, di sɔl, di shɔl, ɔ di kɔlabɔn.
Dis kכndyushכn kin bכku pan pikin dεm we dεn bכn, we dεn bon dεm de gro kwik kwik wan. Spɛshal wan, i kin afɛkt di wan dɛn we ol bitwin 10 ɛn 20. Bɔt i kin afɛkt yɔŋ pikin dɛn ɛn yɔŋ pipul dɛn bak we dɔn pas 20 ia ɛn we dɔn pas 30 ia.
Yu tink se men kayn Ewing sarkoma de?
Yɛs, dɔktɔ dɛn dɔn no tri men kayn dis. Lɛ wi si wetin dɛn bi.
| Di kayn kansa we yu gɛt | Simpul ɛksplen |
|---|---|
| Ewing sarkoma na bon | Dis na di kayn we we pipul dɛn kin gɛt mɔ. As di nem sho, dis kansa kin kam dairekt na di bon. |
| Ewing tumor (EOE) we de kɔmɔt na di ɔs. | na ya, di kansa de divεlכp na di sכft tisu dεm we de rawnd di bon dεm, lεk di mכsul dεm εn di fεt tisu dεm. |
| Pεrifεral primitiv nyuroεktodεmal tכmכro (PPNET) . | Dis kayn tin difrɛn smɔl. I kin bigin na di bon ɔ na di sɔft tisu. I kin bigin na di nerve tissue. |
Wetin na di sayn dɛm fɔ dis sik? Tin dɛn we a fɔ no bɔt as mama ɔ papa
Sɔmtɛm de sayn dɛm fɔ dis sik kin izi fɔ kɔnfyus wit ɔda kɔmɔn sik dɛm, so i impɔtant fɔ no bɔt dis.
Imajin se yu pikin de ple kriket ɛn i de kɔntinyu fɔ tɔk se in sholda de at. Yu tink se na jɔs pen we kin apin we yu de bol. Bɔt if di pen dɔn de fɔ sɔm mɔnt, mɔ na nɛt, ɛn smɔl swɛlin de de, i nɔ fayn fɔ jɔs ignore am.
Di tin we impɔtant pas ɔl na dat if pikin kɔntinyu fɔ kɔmplen bɔt pen, nɔ fɔ pe atɛnshɔn to am. I bɛtɛ fɔ go to dɔktɔ, mɔ if no klia rizin nɔ de fɔ mek yu fil pen.
Dis dɔŋ ya na di men sayn dɛm wae dɛn kin si pan Ewing sarkoma.
| Di sayn we de sho se di sik de | Fɔ no mɔ |
|---|---|
| Pen na di bon dɛn | Dis na di sayn wae kin kam pan pɔrsin. Di pen kin kam ɛn go. Di pen kin wɔs na nɛt, mɔ if i bad fɔ wek di pikin frɔm slip. |
| Wan tumbu ɔ swɛlin | Di kansa kin tan lɛk wan lum ɔ swɛlin. I kin fil wam we yu tɔch am ɛn i kin mek yu fil pen. Dɛn tin ya kin apin na di an, leg, ɔ chɛst. |
| Fiva we nɔ gɛt ɛni rizin | Fiva kin de ɔltɛm we nɔ gɛt ɛni ɔda tin (lɛk we yu nos de rɔn, we yu kɔf, ɔ kol). |
| Brek bon fɔ natin | Kansa kin mek di bon wik, ɛn ivin if nɔto big aksidɛnt (lɛk fɔ grap na bed), i kin brok. Dɔktɔ dɛn kɔl dis ‘pathological fracture.’ |
| Ɔda tin dɛn we de apin | Tin dɛm lɛk fɔ lɛf fɔ it kwik kwik wan ɛn fɔ fil taya ɔltɛm kin apin, bɔt bɔku tɛm dɛn kin jɔs si dɛn tin ya we di kansa dɔn skata to ɔda pat na di bɔdi. |
Wetin mek dis kayn sik kin apin?
Dis kwɛstyɔn kin kam to bɔku mama ɛn papa dɛn. Yu kin tink se, “Wi du sɔntin we nɔ rayt?” Bɔt nɔto dat na di tru.
Ewing sarkoma na bikɔs ɔf wan jenɛtik muteshɔn we kin apin afta dɛn bɔn pikin . Fɔ tɔk am simpul wan, tu jin dɛn na wi sɛl dɛn (EWSR1 ɛn FLI1) kin kam togɛda fɔ mek wan nyu jin we nɔ fayn. Dis nyu jin de mek di sɛl dɛn sheb we dɛn nɔ ebul fɔ kɔntrol ɛn mek wan tumbu we gɛt kansa.
Di impɔtant tin na dat dis nɔto sik we pɔsin kin gɛt frɔm in mama ɛn papa. Dɔn bak, di wan dɛn we de stɔdi bɔt dis nɔ dɔn si se na tin dɛn we de na do, lɛk fɔ smok ɔ fɔ gɛt kemikal, lɛk ɔda kayn kansa. Dis na bikɔs bɔku tɛm i kin kam pan yɔŋ pikin dɛn ɛn yɔŋ pipul dɛn we nɔ kin gɛt di chans fɔ de nia dɛn kayn tin ya fɔ lɔng tɛm. So, dis nɔto sɔntin we kɔmɔt frɔm ɛnibɔdi in fɔlt.
Yu tink se tin dɛn de we kin mek pɔsin gɛt prɔblɛm?
Pan ɔl we ɛnibɔdi kin gɛt dis sik, dɛn dɔn si se sɔm grup dɛn kin gɛt dis sik smɔl.
- Ej: Na di wan dɛn we ol bitwin 10 ɛn 20 ia kin gɛt di prɔblɛm pas ɔl.
- Jɛnda: Man dɛn kin gɛt am smɔl pas uman dɛn.
- Race: Dis sik kin kam pan wayt pipul dɛm pas Eshian ɔ blak pipul dɛm.
Aw dɔktɔ dɛn kin no dis sik kɔrɛkt wan?
We yu go to dɔktɔ bikɔs yu de sɔprayz pan yu pikin in sik, di fɔs tin we i kin du na fɔ tek tɛm chɛk yu pikin. I go fil fɔ ɛni pen ɔ swɛlin, aks yu ɛn yu pikin bɔt di sayn dɛm, dɔn ɔda fɔ du sɔm tɛst fɔ no if yu gɛt di sik.
1. Imej tεst: dεn ya de tek pikchכ fכ di bon dεm εn di sכft tisu dεm we de insay di bכdi.
- Fɔ chɛk wit ɛkstrem rayt
- CT skan we dɛn kin du
- MRI skan we dɛn kin du
- PET skan we dɛn kin du
- Bon skan
2. Bayopsi: Dis na di tεst we de kכnfכm di sik 100% . Na ya, dɛn kin tek wan rili smɔl tisu frɔm di tumbu ɛn chɛk am ɔnda maykroskɔp. Dis na wetin go tɛl yu ɛksaktɔli if na kansa ɔr Ewing in sarkoma.
3. 3. .Blɔd tɛst: If yu kɔnt ɔl di blɔd (CBC) ɛn ɔda patikyula ɛnzaym lɛvɛl dɛn (lɛk LDH) i kin gi sɔm aidia bɔt di kayn kansa ɛn if i dɔn skata.
Wetin na di tritmɛnt dɛm fɔ dis?
Na wan tim we de mɛn kansa de trit Ewing sarkoma. Di tritmɛnt plan kin difrɛn frɔm wan pɔsin to ɔda pɔsin. I dipen pan di saiz fɔ di tumbu, usay i de, ɛn if i dɔn spre to ɔda say dɛn.
Di men we dɛn fɔ trit am na:
- Kimotɛrapi: Dis kin min fɔ gi di bɔdi mɛrɛsin dɛn we de kil di kansa sɛl dɛn. Dɛn kin gi kemotɛrapi fɔs fɔ mek di tumbu smɔl. Dɔn dɛn kin gi dɛn kemotɛrapi bak afta dɛn dɔn du di ɔpreshɔn fɔ kil ɛni kansa sɛl we lɛf.
- Ɔpreshɔn: Afta di tumbu dɔn shrink wit kemotɛrapi, dɛn kin pul am kpatakpata tru ɔpreshɔn.
- Radiation Therapy: Sɔntɛnde, dɛn kin yuz ay ɛnaji rayt fɔ pwɛl di sɛl dɛn we kin lɛf afta dɛn dɔn du di ɔpreshɔn ɔ if di ɔpreshɔn nɔ ebul fɔ pul di tumbu kpatakpata.
Insay sɔm divɛlɔp kɔntri dɛn, dɛn kin yuz tritmɛnt dɛn lɛk ɔtologous stem cell transplant bak if di kansa nɔ dɔn spre to di bon mɛro. Yu kin ebul bak fɔ tek pat pan klinik trial dɛm wae de du risach bɔt nyu tritmɛnt dɛm. Yu kin tɔk to yu dɔktɔ bɔt dis fɔ no mɔ.
Sayd ɛfɛkt ɛn lɔng tɛm ifɛkt dɛn we di tritmɛnt kin gɛt
Fɔ mɛn kansa nɔ kin izi. Kimotɛrapi ɛn redyushɔn tɛrapi kin mek yu gɛt sɔm kayn sayd ɛfɛkt fɔ shɔt tɛm lɛk we yu ia de lɔs, yu vɔmit, ɛn taya. I kin gɛt bak lɔng tɛm ifɛkt (let ifɛkt) we kin apin mɔnt ɔ ia afta di tritmɛnt dɔn.
- di ifekt dεm pan di intanεt כgan dεm (at, kidni dεm) .
- Ifekt dεm pan di pikin in divεlכpmεnt
- Prɔblɛm dɛn we gɛt fɔ du wit yu maynd (wɔri, pwɛl hat) .
- Efεkt dεm pan lanin εn mεmכri abiliti
- Ifekt pan di fyuchu fεtiliti
So, i impɔtant fɔ kɔntinyu fɔ de ɔnda di dɔktɔ in sɔpɔtishɔn, we dɛn de du di tritmɛnt ɛn afta dɛn dɔn trit yu.
Aw mi, as mama ɔ papa, go ɛp mi pikin?
We dɛn no se pikin gɛt kansa, di wan ol famili kin fɔdɔm. Dat na nɔmal tin. Bɔt insay dis tranga tɛm, yu pikin nid yu pas ɛni ɔda tɛm.
Tink bɔt am, we pikin dɛn de yɔŋ na tɛm we pikin dɛn kin fil bad ɛn smɔl ɔltɛm, ɛn dɛn kin tink bɔku bɔt aw dɛn luk ɛn dɛn padi dɛn. Fɔ gɛt fɔ fɛt kansa na dis kayn tɛm kin bi lod wae dɛn nɔr kin ebul fɔ bia.
- Lisin wit peshɛnt:Alaw dɛn fɔ sho wetin dɛn de fred, vɛks, ɛn sɔri-at. I bɛtɛ fɔ lisin to wetin dɛn gɛt fɔ tɔk pas fɔ se, "Nɔ tink bɔt am."
- Ɛvride layf: Dɛn kin rili sɔri fɔ no se dɛn nɔ go ebul fɔ go skul ɔ ple wit dɛn padi dɛn bikɔs dɛn gɛt tritmɛnt. Ɛnkɔrej dɛn fɔ kɔntinyu fɔ gɛt kɔnekshɔn wit dɛn padi dɛn as dɛn ebul (lɛk fɔ kɔl dɛn na vidio) ɛn du tin dɛn we dɛn kin lɛk fɔ du na os.
- Tink bɔt yusɛf bak: Fɔ kia fɔ yu pikin, yu fɔ gɛt trɛnk fɔs. If i nɔ izi fɔ yu bak fɔ bia wit dis, tɔk to pɔsin we yu biliv. If nid de, go to pɔsin we de advays yu bɔt yu maynd.
- Wok klos wit di mɛdikal tim: Tɛl yu pikin gud gud wan bɔt di sik we yu pikin gɛt, di tritmɛnt, ɛn di bad tin dɛn we kin apin to am. Nɔ fred fɔ aks kwɛstyɔn.
Dis na joyn we wi de fes togɛda as famili. Wi kin win dis prɔblɛm wit sɔpɔt ɛn lɔv fɔ wisɛf.
Mɛsej we dɛn kin kɛr go na os
- Ewing Sarcoma na wan kayn kansa we nɔ kin bɔku ɛn we kin mɔs afɛkt di bon ɛn sɔft tisu dɛm fɔ pikin ɛn yɔŋ pipul dɛm.
- If yu gɛt bon pen we yu nɔ ɛksplen, we nɔ de chenj (especially na nɛt), swel, ɔ wan lump, nɔ ignore am ɛn go to dɔktɔ wantɛm wantɛm.
- Dis sik kin kam bikɔs di jin dɛn kin chenj wantɛm wantɛm, nɔto di mama ɛn papa ɔ di pikin in fɔlt.
- Pan ɔl we di we aw dɛn kin trit am (kimotɛrapi, ɔpreshɔn, redyushɔn) nɔ kin izi, dɛn kin mek di tin dɛn we dɛn de du kin rili wok fayn.
- Insay dis tranga waka, di pikin nid mɛrɛsin, ɛn di famili mɛmba dɛn fɔ lɛk am, kia fɔ am, ɛn sɔpɔt am pan aw i de fil.
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