Yu pikin kin fil taya ɔltɛm? Yu gɛt ɛni dawt bɔt aw i de gro? Ɔ sɔntɛnde i kin tek sɔm tɛm fɔ mek ivin smɔl kɔt fɔ lɛ i stɔp fɔ blɔd? Na nɔmal tin fɔ mek mama ɔ papa fil fred we dɛn si tin dɛn lɛk dis. Tide wi go tɔk bɔt wan rare kɔndishɔn wae bɔrku pipul nɔr ivin yɛri bɔt, bɔt i rili impɔtant fɔ no bɔt. Dat na Fankɔni Anemia (FA) . Pan ɔl we di nem kin tan lɛk se i strenj smɔl, lɛ wi tɔk bɔt am simpul wan, di we we yu go ɔndastand.
Fɔ tɔk am simpul wan, wetin na Fanconi anemia (FA)?
Fanconi anemia, ɔ FA fɔ shɔt, na wan sik we nɔ kin apin we pɔsin kin gɛt frɔm in mama ɛn papa . I kin afɛkt yu bon mɛrɔ mɔ . Naw yu go de wɔnda wetin dis bon mɛro de tɔk bɔt.
Tink bɔt di bon mɛro lɛk pat we tan lɛk spɔnj insay di big bon dɛn na wi bɔdi. I tan lɛk di faktri we de mek wi bɔdi fɔ mek blɔd. Dis faktri de mek tri men kayn sɛl dɛn we wi bɔdi nid:
- Rɛd blɔd sɛl dɛn: Na di wokman dɛn we de kɛr ɔksijɛn ɔlsay na di bɔdi.
- Wait blɔd sɛl: Na wi bɔdi in ami we de fɛt sik ɛn jem.
- Plɛtlɛt: Smɔl wokman dɛn we kin stɔp fɔ blɔd ɛn klot blɔd we injuri de.
Naw, pan pɔsin we gɛt FA, di bon mɛro, di faktri, nɔ de wok fayn. Dis min se i nɔ kin ebul fɔ mek inof wɛlbɔdi blɔd sɛl dɛn. Wi kin kɔl dis bon mɛrɔ we nɔ de wok fayn . Dis kin mek wi gɛt bɔku prɔblɛm dɛn na di bɔdi. Dɔn bak, dis sik kin afɛkt ɔda pat dɛn na di bɔdi ɛn aw di bɔdi de luk.
Aw FA kin afɛkt mi ɔ mi pikin in bɔdi?
Di we aw FA de afɛkt ɛnibɔdi kin difrɛn, bɔt in jɛnɛral, i kin afɛkt tri men we dɛn.
1. Fyzikal Abnɔmaliti: Na lɛk 75% pan di pikin dɛm we dɛn bɔn wit FA gɛt sɔm kayn bɔdi abnɔmaliti. Sɔm pan dɛn tin ya kin de we pɔsin kin si (fɔ ɛgzampul, chenj na di an ɛn big an), ɔda wan dɛn kin gɛt fɔ du wit di ɔgan dɛn we de insay.
2. Bone Marrow Failure: Dis kכndyushכn kin apin pan lεk 90% pan di FA pasεnshכn dεm. Dis min se smɔl smɔl di bon mɛrɔ kin stɔp fɔ mek blɔd sɛl dɛn we gɛt wɛlbɔdi. Dis kin mek yu gɛt wan sik we dɛn kɔl aplastic anemia ɛn wan sik we dɛn kɔl myelodysplastic syndrome (MDS) . Dɛn kin tek MDS bak as prɛ-lukimiya.
3. Di risk fɔ gɛt kansa we de go ɔp:Pipul wae gɛt FA kin gɛt bɔrku risk fɔ gɛt sɔm kayn kansa pas di jenɛral pipul dɛm. Dɛn kin gɛt mɔ blɔd kansa lɛk lukimiya ɛn kansa na dɛn ed, nɛk, ɛn skin. Bitwin 10% ɛn 30% pan dɛn pipul ya go gɛt sɔm kayn kansa.
De impɔtant tin na dat nɔr to ɔl dɛn sik ya kin apin pan ɔlman wae gɛt dis sik. Sɔm pipul kin gɛt bɔrku pan dɛn kayn sik ya, ɛn ɔda wan dɛn kin gɛt smɔl smɔl sayn dɛm.
So yu tink se FA na kansa?
Dis na prɔblɛm we bɔku pipul dɛn gɛt. Nɔ, FA nɔto kansa. Bɔt bikɔs na sik we pɔsin kin gɛt we i kam pan jɛnɛtiks, di bɔdi nɔ kin ebul fɔ mek di sɛl dɛn we dɔn pwɛl. So, as tɛm de go, dɛn sɛl ya we dɔn pwɛl kin gɛt mɔ risk fɔ gɛt kansa. Fɔ tɔk am simpul wan, FA na wan sik we kin mek pɔsin gɛt kansa, bɔt nɔto kansa insɛf.
Wetin na di sayn dɛm fɔ FA sik?
Bikɔs FA kin afɛkt difrɛn pipul dɛn difrɛn we, di sayn dɛm kin difrɛn bad bad wan. Sɔm pipul kin go fɔ lɔng lɔng tɛm ɛn nɔr kin gɛt ɛni klia sayn. Lɛ wi sheb dɛn sik ya to sɔm men kategori dɛm.
| 1. Simptom dɛm wae gɛt fɔ du wit Anemia | |
|---|---|
| Fɔ fil bɔku tɛm fɔ taya pasmak | Fɔ fil so taya dat yu nɔr kin ivin du nɔmal wok, ɛn fil fɔ slip ɔltɛm. |
| Pale skin | Pale skin, lip, ɛn ɔnda di yay bikɔs blɔd nɔ de na di bɔdi. |
| I nɔ kin izi fɔ yu fɔ blo | Fɔ fil shɔt fɔ blo ivin if yu tray smɔl, lɛk fɔ klaym stej. |
| Di at we de blo | Fɔ fil lɛk se yu at de bit tumɔs. |
| Yu ed kin at ɔltɛm | Di ed kin at bikɔs di ɔksijɛn we di bren nid nɔ bɔku. |
| 2. Di simptom dɛm we gɛt fɔ du wit di bon mɛrɔ we nɔ de wok fayn | |
|---|---|
| We pɔsin kin sik ɔltɛm | If di wayt blɔd sɛl nɔ bɔku, dat kin mek di bɔdi nɔ ebul fɔ fɛt di sik, ɛn dis kin mek i gɛt baktri ɛn fɛns infɛkshɔn bɔku tɛm. |
| Blɔd ɛn brus | Bikɔs di pletlɛt dɛn nɔ bɔku, ivin smɔl wund nɔ go stɔp fɔ blɔd. Yu kin blɔd kɔmɔt na yu gam ɛn yu nos. Yu kin ivin gɛt blu brus na yu bɔdi. |
| 3. Di kwaliti dɛm we gɛt fɔ du wit di chenj dɛm we de apin na di bɔdi | |
|---|---|
| Di chenj dɛn we de apin na di an ɛn finga dɛn | Wan abnɔmal shep fɔ di big an, we gɛt tu big an na wan an, ɔ we nɔ gɛt big an atɔl. |
| Di we aw pɔsin nɔ de gro fayn | Nɔ gɛt ayt ɔ wet we fit di ej. Fɔ bi smɔl pas di avɛrej. |
| Di ed saiz kin chenj | Smɔl ed we nɔmal (maykrosɛfali) .ɔ we i nɔ de mek i big (haydrosɛfali) . Dis kin afɛkt di pikin in gro, tɔk, ɛn waka. |
| Spɔt dɛn na di skin | Big big layt brawn spat dɛn na di skin. Dɛn kin kɔl dɛn tin ya bak "café-au-lait" spat, we tan lɛk spat we tan lɛk kɔfi wit milk. |
| Ɔda tin dɛn we de apin | Yu nɔ de yɛri fayn, yu yes nɔ de shep fayn, yu spayna de kɔba (scoliosis) , sɔm prɔblɛm dɛn na yu kidni ɔ at. |
Wetin mek dis FA sityueshɔn kin apin?
Dis kin apin bikɔs ɔf wan prɔblɛm we de na wi jin dɛn . Tink bɔt jin as di blueprint fɔ bil wi bɔdi. Na lɛk 20 jin dɛn de we de insay FA. Di men wok we dɛn jin ya de du na fɔ mek wi DNA we dɔn pwɛl .
כlsay na wi layf, bikoz fכ tin dεm we de na wi envayroment εn di it dεm we wi de it, di DNA we de na wi bכdi in sεl dεm de pwεl sכmtεm. Dat na nɔmal tin. di protin dεm we di FA jin dεm mek de wok lεk wan ripa tim, we de fiks dis DNA we dεn dכn pwεl.
Bɔt bikɔs pɔsin we gɛt FA gɛt muteshon na dɛn jin ya, di ripa tim nɔ de wok fayn. Wetin kin apin da tɛm de?
- DNA we dɔn pwɛl de gɛda.
- dis kin mek di sεl dεm bigin fכ sheb abnכmal wan (we kin mek yu gεt kεnsar) כ di sεl dεm de day.
- di bon mכro de wik εn di fכshal chenj dεm de apin we di sεl dεm de day.
Dis na sɔntin we mama ɛn papa kin gɛt frɔm pikin dɛn. If di mama ɛn papa ɔl tu gɛt dis jin we nɔ fayn, 25% chans de fɔ mek dɛn pikin gɛt FA.
Aw dɔktɔ dɛn kin no if pɔsin gɛt FA?
Bɔku tɛm dɛn kin no FA we dɛn de trit ɔ tɛst fɔ ɔda sik (lɛk anemia ɔ kansa). Yu dɔktɔ go tek tɛm luk yu ɔ yu pikin in sik ɛn tɛl yu fɔ du sɔm tɛst dɛn if yu tink se FA.
Test dɛn we dɛn kin du bɔku tɛm:
- Complete Blood Count (CBC): Dis de sho di nɔmba fɔ di rɛd sɛl dɛn, wayt sɛl dɛn, ɛn di pletlɛt dɛn we de na di blɔd. I kin chɛk fɔ ɛni lɔw lɛvɛl pan dɛn tin ya.
- Bone Marrow Biopsy: Dɛn kin tek smɔl smɔl bon mɛrɔ ɛn chɛk am ɔnda maykroskɔp fɔ si aw di sɛl dɛn de fɔm ɛn us prɔblɛm dɛn gɛt.
- MRI ɛn Ultrasound Scan: Dɛn tɛst ya kin ɛp fɔ si if ɛni chenj de na di ɔgan dɛn we de insay di bɔdi (lɛk di kidni ɛn at).
Spɛsifi k tɛst fɔ kɔnfɔm FA:
- Kromozom Brek Tεst: Dis na di men tεst we dεn kin yuz fכ no FA. Insay dis tɛst, dɛn kin ad wan kemikal to di sɛl dɛn we de na di blɔd sɛmpul ɛn dɛn kin chɛk di kromozom dɛn fɔ si if dɛn dɔn pwɛl ɔ if dɛn brok. di kromozom dεm na di sεl dεm fכ pכsin we gεt FA kin pwεl kwik pas nכmal pכsin.
- Jεnεtik Skrin: Dis tεst kin no di spεsifi k jεnεtik difεkt we de mek FA.
A kin gɛt tɛst we a gɛt bɛlɛ?
Yɛs. If pɔsin na yu famili gɛt FA, dɛn kin tɛst yu pikin fɔ di sik we i gɛt bɛlɛ. dis kin bi bay we dεn de yuz tεst dεm lεk amniocentesis כ chorionic villus sampling . Yu kin tɔk to yu dɔktɔ bɔt dis fɔ no mɔ.
Wetin na di tritmɛnt dɛm fɔ FA?
Di men gol fɔ dɔktɔ dɛn we dɛn de trit FA na fɔ kɔntrol di sik dɛn ɛn manej di kɔmplikeshɔn dɛn.
- Bone Marrow Transplant: Dis na di onli tritmɛnt fɔ blɔd prɔblɛm we FA kin kam wit. insay dis, dεn kin pwεl di sikman in bon mכro we nכ de wok fayn εn dεn kin gi bak di bon mכro we kכmכt frכm wan hεlty, kכmpatibl dכna to di sikman.
- Androgen Therapy: Dis na wan kayn ɔmon. Dɛn mɛrɛsin ya kin mek di bon mɛro wok fɔ ɛp fɔ mek di rɛd blɔd sɛl dɛn ɛn di pletlɛt dɛn bɔku.
- di tin dεm we de mek di pikin gro: dεn kin gi dεn tin ya as injεkshכn εn dεn kin εp fכ mek di wayt bכdi sεl dεm εn rεd bכdi sεl dεm frכm di bon mכro bכku.
- Ɔpreshɔn: I kin nid fɔ du ɔpreshɔn fɔ kɔrɛkt di chenj dɛn we de apin na di bɔdi (fɔ ɛgzampul, prɔblɛm wit di big fut) ɔ fɔ mek di ɔgan dɛn we dɔn pwɛl.
Di tin we impɔtant pas ɔl na dat di dɔktɔ we de chɛk yu go disayd us tritmɛnt we go fayn fɔ yu ɔ yu pikin. So mek shɔ se yu fala wetin di dɔktɔ tɛl yu fɔ du.
Livin wit FA ɛn tin dɛn fɔ wach fɔ
FA na wan sik wae de kam wae yu de liv yu layf wae yu fɔ de manej, so i impɔtant fɔ de wach yu wɛl bɔdi ɔltɛm.
- Risk fɔ gɛt kansa: Bikɔs FA de mek di risk fɔ gɛt kansa bɔku, dɛn fɔ avɔyd fɔ smok ɛn drink rɔm ɔltogɛda . Dɔn bak, bikɔs di risk fɔ gɛt kansa na yu skin kin bɔku, we yu de go na do na di sanYu fɔ protɛkt yu skin bay we yu de yuz gud tin fɔ protɛkt yusɛf frɔm di san ɛn wɛr hat. Yu fɔ no bɔt nyu spat ɛn bɔmp dɛn na yu skin.
- Blɔd: Nɔ du spɔt ɛn tin dɛn we kin mek pɔsin wund bikɔs di pletlɛt dɛn nɔ bɔku. Yuz saf tut brɔsh we yu de brus yu tit. If yu gɛt ɛni blɔd ɔ brus, tɛl yu dɔktɔ wantɛm wantɛm.
- Fɔ chɛk yu dɔktɔ ɔltɛm: Atɛnd di chɛk-ap ɔltɛm lɛk aw yu dɔktɔ tɛl yu fɔ du. I impɔtant fɔ mek dɛn du blɔd tɛst ɛn kansa skrinin di rayt tɛm.
A stil nid fɔ wɔri bɔt dɛn tin ya afta we dɛn dɔn transplant mi bon mɛrɔ fayn fayn wan?
Yɛs, na fɔ tru. Pan ɔl we bon mɛrɔ transplant kin mɛn di blɔd sik dɛn we FA kin mek, di FA jenɛtik dɛfɛkt stil de na ɔda sɛl dɛn na di bɔdi. So, di risk fɔ gɛt kansa na say dɛn lɛk ed, nɛk, ɛn skin stil de. So, i rili impɔtant fɔ de ɔnda dɔktɔ fɔ di res ɔf yu layf ivin afta di transplant.
Mɛsej we dɛn kin kɛr go na os
- Fanconi anemia (FA) nɔto kansa, bɔt na wan sik we nɔ kin apin so ɔltɛm, we pɔsin kin gɛt frɔm in mama ɛn papa we kin mek pɔsin gɛt kansa.
- Dis sik kin mɔs afɛkt di bon mɛro, we kin mek di blɔd sɛl dɛn we gɛt wɛlbɔdi nɔ bɔku.
- Di kɔmɔn sayn dɛm na fɔ taya ɔltɛm, fɔ gɛt blɛsin, fɔ sik ɔltɛm, ɛn fɔ gɛt blɔd ɔ brus izi wan.
- Bɔn mɛro transplant na di bɛst tritmɛnt fɔ di prɔblɛm dɛn we gɛt fɔ du wit blɔd we dis sik gɛt. Bɔt ivin afta dɛn dɔn transplant am, i impɔtant fɔ mek dɛn de wach am fɔ lɔng tɛm bikɔs ɔf di risk fɔ gɛt kansa.
- If yu ɔ yu pikin gɛt dɛn sik ya ɔ yu gɛt famili histri, nɔ panik ɛn go to yu dɔktɔ wantɛm wantɛm fɔ advays.
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