Yu no bɔt Siklɔs Sɛl Anemia? Lɛ wi tɔk bɔt am!

Yu dɔn ɛva yɛri bɔt di nem ‘Sickle Cell Anemia’? Sɔntɛm dis nem de sawnd smɔl strenj, ɔ ivin de mek pɔsin fred smɔl. Bɔt na tin we pɔsin kin gɛt we i kam pan wi blɔd. Fɔ tɔk am simpul wan, wetin kin apin pan dis na dat wi rɛd blɔd sɛl dɛn, dat na di rɛd blɔd sɛl dɛn we de na di blɔd, kin chenj dɛn shep. Lεk sikεl (na dat mek dεn kכl am 'sikl'). Dis chenj kin mek wi gɛt difrɛn wɛlbɔdi prɔblɛm dɛn. So, yu tink se wi go tɔk bɔt dis smɔl mɔ tide?

Wetin na Siklɔs Sɛl Anemia? Wetin rili apin?

Sikl sel anemia na wetin dכkta dεn kכl di mכst siriכs fכm f כ di big grup we dεn kכl ‘Sikl Sεl Disease’. Dis na sik we dɛn bɔn wit, dat na blɔd sik we pɔsin kin gɛt frɔm in mama ɛn papa . Di men rizin fɔ dis na we di jɛnɛtik chenj. biכs fכ dis jεnεtik mכtεshכn, di rεd bכdi sεl dεm we dεn prodyuz na wi bכdi nכ nכmal fכ rawnd, bכt dεn bεn εn strεch lεk sikl (in shep fכ di lεta C). dכkta dεn kin kכl dεn ya bak "sikl sεl dεm".

Naw luk, wi nɔmal rɛd blɔd sɛl dɛn rawnd ɛn fleksibul, so i izi fɔ travul tru wi dilik blɔd vesel dɛn ɛn kɛr ɔksijɛn go na ɔl di pat dɛn na di bɔdi, ɔl di ɔgan dɛn, ɛn ɔl di tisu dɛn. Bɔt dɛn rɛd blɔd sɛl dɛn ya we tan lɛk sikl kin stif ɛn dɛn kin stika . So dɛn nɔ kin travul izi wan tru di blɔd vesel dɛn, bɔt dɛn kin stɔp na sɔm say dɛn. Lɛk trafik jam na rod. di כda tin na, dεn ‘sikl’ sεl dεm ya de brok dכn εn day fast pas nכmal rεd bכdi sεl dεm. Bikɔs ɔf ɔl dis, di nɔmba fɔ di wɛlbɔdi rɛd blɔd sɛl dɛn na yu bɔdi kin go dɔŋ, ɛn dis kin mek yu nɔ gɛt bɛtɛ blɔd. Dat min se blɔd nɔ de.

Trade, pikin dɛn we dɛn bɔn wit dis sik nɔ bin gɛt bɛtɛ chans fɔ liv te dɛn big. Bɔt bikɔs dɛn dɔn go bifo pan mɛrɛsin, fɔ no di sik kwik kwik wan, ɛn fɔ gɛt nyu tritmɛnt dɛn , dis dɔn chenj bad bad wan. Naw, bɔku pipul dɛn de liv te dɛn ol 50 ia ɔ pas dat.

Aw dis sik kin bɔku na Sri Lanka? Udat kin gɛt am mɔ?

I rili at fɔ fɛn sɔm statystik bɔt dis sik na Sri Lanka. Bɔt we yu luk di wɔl, dis sik kin mɔna pipul dɛn we kɔmɔt na Afrika, Sawt Yurop, Midul Ist ɔ Eshia Indian. Dat min se sɔm jɛnɛtik link de.

Wetin na di sayn dɛm fɔ siklɛt anemia?

De sayn dɛm fɔ dis sik kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin, bɔt sɔm kɔmɔn sayn dɛm de:

• Taya bikɔs dɛn nɔ gɛt blɔd: We dis sik kin apin to yɔŋ pikin dɛn, dɛn kin kray bɔku tɛm, dɛn nɔ kin fil fayn, ɛn dɛn nɔ kin gri fɔ gi dɛn bɛlɛ.
• Di sik dɛn we kin kam bɔku tɛm:Dis sik kin pwɛl wi splin. Di splin na impɔtant pat pan wi imyun sistɛm. So we i wik, chans de fɔ mek i gɛt sik ɛn infɛkshɔn. Bɔt bikɔs ɔf di antibayɔtik ɛn vaysin dɛn we de naw, dis risk dɔn ridyus bad bad wan.
• Pen: Dis na wan pan de sayn dɛm wae kin kam wit dis sik wae kin kam pan pɔrsin wae nɔr kin fayn. di tisu dεm na di bכdi nכ de gεt inof כksijεn, we de mek di tisu dεm pwεl. Dis damej na in de mek pɔsin fil pen. Di say dɛm wae yu kin fil pen pas ɔl na yu an, yu fut, yu chɛst, ɛn yu bak. Sɔntɛnde, i kin bigin lɛk smɔl pen ɛn i kin go ɔp smɔl smɔl, ɔ i kin bi pen we pɔsin nɔ ebul fɔ bia wantɛm wantɛm.
• di an εn fut we de swεla wit pen: Dis na wan pan di fכs sayn dεm fכ sikl sεl anemia na pikin. di swεla de apin biכs di rεd bכdi sεl dεm we lεk sikl kin stכk na di dilik bכdi vεsul dεm na di pikin in an εn fut, we kin mek di blכd fכ fכlכ.
• Yɔlɔ-kɔlɔ yay ɛn skin frɔm janda: Wi liva de wok fɔ filta di rɛd blɔd sɛl dɛn. Insay siklɔs anemia, wan tin we dɛn kɔl bilirubin, we kin kɔmɔt frɔm sikɛl sɛl dɛn we kin day kwik, kin gɛda na di bɔdi, ɛn dis kin mek pɔsin gɛt janda.

dis sayn dεm kin bigin fכ sho we di pikin ol lεk 6 to 9 mכnt . As tεm de go, as di nכmba fכ di abnכmal (malignant) sεl dεm na di bכdi de go כp, di sayn dεm kin chenj εn i kin bi mכr.

Wetin mek sikɛl sɛl anemia kin kam? Wetin kin mek i apin?

Siklɔs anemia kin kam bikɔs ɔf di chenj dɛn we de apin na wi jin dɛn. spεshal wan, wan jin de we dεn kכl di HBB jin. Dis jin de tɛl wi fɔ mek wan prɔtin we dɛn kɔl beta-globin, we na pat pan wi ɛmoglobin. As yu no, ɛmoglobin na di impɔtant tin we de ɛp wi rɛd blɔd sɛl dɛn fɔ kɛr ɔksijɛn.

So, fɔ mek yu gɛt sikɛl sɛl anemia, yu fɔ gɛt di sem jin we dɛn dɔn chenj frɔm yu mama ɛn papa . Sɔntɛnde, if yu gɛt tu jin dɛn we dɛn dɔn chenj frɔm yu mama ɛn papa dɛn ɔl tu, yu kin gɛt ɔda sik dɛn we nɔ kin rili bad. dכkta dεn kכl dεn tin ya ‘variant jεnεtik mכtεshכn dεm’.

Us kɔmplikɛshɔn kin apin bikɔs ɔf dis kɔndishɔn?

Siklɔs anemia kin mek pɔsin gɛt siriɔs prɔblɛm dɛn we kin mek pɔsin in layf de pan denja . Fɔ ɛgzampul, pipul dɛm wae gɛt dis sik kin nid fɔ gɛt imejensi mɛdikal kia ɛn fɔ go na ɔspitul, mɔ fɔ sik dɛm wae dɛn kɔl akyu chɛst sindrom (ACS) ɛn vaso-occlusive crisis (VOC).

Ɔda prɔblɛm dɛn de we kin apin:

• Krכnik kidni sik: Dis kכndyushכn kin apin we di kidni dεm nכ de gεt inof כksijεn, we kin mek di tisu dεm pwεl.
• di rεtina dεm we dεn kכl dεtach: Dis kin apin if sik sεl dεm blכk di bכdi vεsul dεm na di yay.
• Priapism (painful erection): Na wan sik we kin kam we di blɔd vesel dɛn na di penis kin blok.
• Splenic sequestration: If sikle sel dεm trכp na di splin εn blכk bכdi fכ fכlכ, dis kin mek di bכdi sכt wan, siriכs anemia.
• Stroke: Ɛnibɔdi we gɛt sikɛl sɛl anemia, ivin yɔŋ pikin dɛn (pidiatric stroke ), de pan denja.

Wetin na Akyu Chɛst Sindrom (ACS)?

Dis na di kɔmplikeshɔn we kin apin we siklɛt nɔ gɛt bɛtɛ blɔd. Na in bak na di men tin we kin mek pipul dɛn day ɛn na di sɛkɔn tin we kin mek pipul dɛn de na ɔspitul. dis kin apin we sik sεl dεm kin kכlכp tכgeda εn blכk di bכdi vεsεl dεm na di lכng. Di sayn dɛm na:

• I kin pen na yu chɛst wantɛm wantɛm.
• Kɔf.
• Fiva.
• I nɔ kin izi fɔ yu fɔ blo.

Wetin na Vaso-okluziv Kraysis (VOC)?

Dis na we sik sel dɛn kin blok di blɔd vesel dɛn. Dɔktɔ dɛn kin kɔl dis bak "acute pain crisis." Insay VOC, pen we yu nɔ go ebul fɔ bia kin apin na yu an, yu leg, yu bɔdi we de dɔŋ, ɛn yu bɛlɛ.

Sɔntɛnde dɔktɔ dɛn kin kɔl VOC di "sik we pɔsin nɔ de si." Bikɔs, bɔku tɛm, di wangren sayn na pen. No sayn nɔr de fɔ se yu gɛt injury ɔr ɔda sik. I jɔs de mek pɔsin fil pen.

Di men tritmɛnt fɔ dis bad bad pen na opioid pen kil. Bɔt sɔm stɔdi dɔn sho se dis opioid we dɛn nid kin mek pipul dɛn we gɛt sikɛl sɛl anemia, kin mek dɛn gɛt pwɛl hat ɛn wɔri. Dis na ɔda prɔblɛm we yu fɔ gɛt we yu de liv wit dis sik.

Aw dɛn kin no dis sik? (Diagnosis) .

Dɔktɔ dɛn kin no se yu gɛt siklɛt anemia bay we dɛn fɔs chɛk yu. Dɛn kin fil yu splin ɔ yu liva. Dɛn go aks bɔt yu sik, mɔ di pen na yu an ɛn yu fut, ɛn bɔt yu bɛlɛ. Dɛn go aks bak bɔt yu sik dɛn we yu bin dɔn gɛt trade ɛn if yu dɔn gɛt ɛni infɛkshɔn. Dɔn dɛn kin du tɛst dɛn lɛk:

• Kɔmplit Blɔd Kɔnt (CBC): Dis kin gɛt fɔ du wit sɔm tɛst dɛn we de luk spɛshal wan pan yu rɛd blɔd sɛl dɛn.
• Ɛmoglobin ilɛktrɔfɔrɛsis: Dɛn kin kɔl am bak ay-pafɔmɛnshɔn likwid kromatografi, dis tɛst kin analayz yu ɛmoglobin fɔ no ɛn mɛzhɔ di abnɔmal kayn ɛmoglobin we kin mek sikl sɛl anemia.
• Jɛnɛtik tɛst: Yu dɔktɔ kin ɔda fɔ du dɛn tɛst ya fɔ si if yu gɛt di chenj dɛn we de apin na yu jɛnɛtiks we de mek siklɛt anemia.

Wetin na di tritmɛnt dɛm fɔ dis? Yu tink se dɛn kin mɛn am?

Di tritmɛnt fɔ siklɛt anemia de dipen pan yu sayn dɛm ɛn yu ɔl wɛl bɔdi. Fɔ ɛgzampul, if yu gɛt siriɔs prɔblɛm lɛk akyu chɛst sindrom, yu kin gɛt siriɔs pen ɔltɛm, ɔ if yu gɛt wan sik lɛk paralayz, yu dɔktɔ kin tɛl yu fɔ transplant allogeneic stem cell. Dis na di wangren we naw fɔ mɛn sikɛl sɛl anemia kpatakpata .

Ɔda tritmɛnt dɛn na:

• Blɔd we dɛn kin gi pɔsin.
• Antibayɔtik fɔ infɛkshɔn.
• Mɛrɛsin wae de ɛp fɔ pul sɔm patikyula sayn dɛm. Sɔm pan dɛn na:
• Hydroxyurea: Dis na wan mɛrɛsin we de mek pɔsin nɔ gɛt kansa. Dɛn kin yuz am fɔ pikin dɛn we ol bitwin 6-9 mɔnt, pikin dɛn, ɛn big pipul dɛn. I kin ridyus di insidɛns fɔ siriɔs kɔmplikeshɔn ɛn ridyus di simptom dɛm fɔ anemia.
• Voxelotor: Dis de mek di rεd bכdi sεl dεm nכ de tכn to sikεl sεl dεm. Dɛn kin gi am to pikin dɛn we dɔn pas 4 ia.
• L-glutamine therapy: Dis mεdikeshכn we dεn kin gi pikin dεm we pas 5 ia εn big pipul dεm, de stכp di sikl sεl dεm fכ bi mכr abnכmal.
• Crizanlizumab-tmca: Dis de ridyus di frɛkuɛns fɔ VOC/akyu pen kraysis. Dɛn kin gi am to pipul dɛn we dɔn pas 16 ia.

Aw mi layf go tan lɛk if a gɛt sikɛl sɛl anemia?

Fɔ bɔku pipul dɛn, sikɛl sɛl anemia na sik we nɔ de mɛn . Dis min se yu go nid mɛrɛsin ɛn sɔpɔt ɔlsay na yu layf. Di sayn dɛm kin bi smɔl fɔ sɔm, smɔl fɔ ɔda pipul dɛm, ɛn i kin tranga fɔ mek ɔda pipul dɛn layf de pan denja. Di tin we de apin to ɔlman difrɛn. So tɔk to yu dɔktɔ bɔt wetin fɔ ɛkspɛkt. I no yu wɛl bɔdi gud gud wan ɛn aw di sik go afɛkt yu.

Dis sik kin wɔs as yu de ol?

Yɛs, as wi de ol, ɔda, sɔntɛm mɔ siriɔs wɛlbɔdi prɔblɛm kin kam bikɔs ɔf di ɔksijɛn we nɔ de gi fayn to di ɔgan ɛn tisu dɛn. Pipul wae gɛt siklɛt anemia kin gɛt mɔr risk fɔ paralayz, dɛn lɔng, kidni, splin, ɛn liva pwɛl.

Wetin na di avrej layf we pɔsin we gɛt dis sik kin liv?

Tin dɛn dɔn bɛtɛ naw pas aw dɛn bin de trade. If dɛn no di sik kwik kwik wan ɛn trit dɛn fɔ ridyus di prɔblɛm dɛn , pipul dɛn we gɛt sikɛl sɛl anemia kin liv te dɛn rich dɛn 50 ia. Sɔm pipul dɛn kin liv lɔng pas dat. If yu gɛt kwɛstyɔn bɔt dis, tɔk to yu dɔktɔ. I kin ɛksplen am to yu.

Wan we de fɔ mek dis sik nɔ kam?

Siklɔs we nɔ gɛt bɛtɛ blɔd na sik we pɔsin kin gɛt frɔm in mama ɛn papa, so dɛn nɔ go ebul fɔ avɔyd am.. Bɔt yu kin du blɔd tɛst fɔ si if yu gɛt di jenɛtik mutation we kin mek siklɛt anemia. Insay bɔku divɛlɔp kɔntri dɛn, dɛn kin tɛst ɛni pikin fɔ di sik we dɛn bɔn am. Di tin we impɔtant pas ɔl na fɔ no di sik kwik kwik wan ɛn bigin fɔ trit am .

Aw a go liv fayn wit dis sik? (Fɔ kia fɔ yusɛf) .

Nyu tritmɛnt dɛn dɔn mek pipul dɛn we gɛt sikɛl sɛl anemia ebul fɔ liv bɛtɛ layf. If yu gɛt dis sik, tink bɔt dɛn tin ya:

• Go to spɛshal dɔktɔ: I impɔtant fɔ go to tritmɛnt frɔm wan tim we de mɛn blɔd.
• Gɛt dɔktɔ chɛk ɔltɛm: If yu gɛt gud padi biznɛs wit yu famili dɔktɔ ɛn go de chɛk yu ɔltɛm, dat kin ɛp fɔ mek yu nɔ gɛt siriɔs prɔblɛm dɛn.
• Tink bɔt aw fɔ mɛn yu pen: Pen na wan pat pan dis sik. Aks advays frɔm pɔsin we sabi bɔt aw fɔ mɛn yu pen.
• Gɛt mɛntɛl hεlth sɔpɔt: Sɔmtɛm dis sik kin mek yu fil se yu nɔr de nia ɔda pipul dɛm, pwɛl hat, ɛn wɔri. If yu fil dis kayn we, tɔk to dɔktɔ.
• Protɛkt yusɛf frɔm infɛkshɔn: Tɔk to yu dɔktɔ bɔt aw fɔ tek di vaysin. Tek step fɔ protɛkt yusɛf frɔm infɛkshɔn.
• Yu fɔ mɛmba di say we yu de: I rili impɔtant fɔ mek pipul dɛn we gɛt sikɛl sɛl anemia kɔntinyu fɔ gɛt balans tɛmpracha na dɛn bɔdi. Stay away frɔm ples dɛn we wam pasmak ɛn kol.
• Luk insay klinik trial: Dɔktɔ ɛn risach pipul dɛn kin tɛst nyu tritmɛnt ɔltɛm. Yu kin gɛt di chans fɔ put an pan wan.

Ustɛm a fɔ go to dɔktɔ?

If yu fil se yu sik de wɔs, ɔr if yu gɛt nyu sik, go to dɔktɔ wantɛm wantɛm .

Ustɛm yu nid fɔ go na di Imejɛnsi Rum?

Sikl sɛl anemia kin mek pɔsin gɛt siriɔs mɛrɛsin. Go na di imejensi rum wantɛm wantɛm if yu gɛt ɛni wan pan dɛn sayn ya:

• Di sayn dɛm fɔ anemia (we yu taya pasmak, yu nɔ de blo shɔt, yu at nɔ de bit ɔltɛm).
• Fiva we pas 38.5 digri sɛlshiɔs (101.3 Fahrenheit).
• Chɛst de pen.
• Kɔf.

Dis kɔndishɔn kin mek bak di risk fɔ gɛt strok. Stroke na wan mɛdikal imejensi . If yu gɛt dɛn sik ya, go na ɔspitul wantɛm wantɛm:

• Prɔblɛm wit bɔdi balans ɔ kɔdineshɔn.
• Blɔr vishɔn ɔ dabl vishɔn.
• Kɔnfyus.
• Wik ɔ swɛt na wan say na di bɔdi.
• I nɔ izi fɔ tɔk (stuttering).

Fɔ dɔn, na sɔm tin dɛn we wi fɔ mɛmba

Siklɔs we nɔ gɛt bɛtɛ blɔd na sik we rili tranga. Bɔku ia bifo dis tɛm, pikin dɛn we dɛn bɔn wit dis sik nɔ bin gɛt bɛtɛ op fɔ sev. Bɔt,Risach we dɛn dɔn du fɔ mɛn pipul dɛn dɔn mek bɔku tin dɛn insay di las tɛn ia ɔ so, so bɔku pipul dɛn naw ebul fɔ kɔntrol dis sik we nɔ de mɛn ɛn liv fayn layf.

If yu ɔ yu pikin gɛt dis sik, pan ɔl we yu gladi fɔ di prɔgrɛs we yu dɔn du trade, tink gud wan bɔt tumara bambay. Risach pipul dɛn kin tray ɔltɛm fɔ fɛn nyu tritmɛnt fɔ dis sik. Tɔk to yu dɔktɔ ɛn no bɔt nyu klinik trial dɛm. Nɔ ɛva giv ɔp op . I rili impɔtant fɔ fala di rayt advays we dɔktɔ gi yu ɛn gɛt gud abit.

` Siklɔs sɛl anemia, anemia, sik dɛn we pɔsin kin gɛt frɔm in mama ɛn papa, blɔd sik, jɛnɛtik muteshon, ɛmoglobin, wɛlbɔdi tips