Wetin na albinism? Wetin mek di skin ɛn di ia kin tɔn blak?

Yu dɔn ɛva notis se sɔm pipul dɛn kin gɛt bɔku bɔku skin ɛn dɛn ia, ɛn sɔntɛnde dɛn kin ivin wayt? Ivin dɛn yay dɛn kin gɛt layt blu ɔ brawn. Insay sosayti, sɔntɛnde wi kin kɔl dɛn pipul ya difrɛn nem dɛn. Bɔt dɛn kin kɔl dis sik we dɛn kɔl albinism. Bɔku pipul dɛn kin tink se dis na sik. Bɔt fɔ tru, i nɔto sik, ɛn i nɔ kin pas. So, yu tink se wi fɔ no bɔt dis tide?

Wetin rili na Albinism?

Fɔ tɔk am simpul wan, albinism na wan jenɛtik kɔndishɔn we kin kam bikɔs di pigmɛnt melanin we de na wi bɔdi kin go dɔŋ ɔ lɔs ɔltin.

Tink bɔt melanin as natura "ink" na wi bɔdi. Dis ink na in de gi kɔlɔ to wi skin, ia, ɛn yay . Pɔsin we gɛt mɔ melanin gɛt dak skin, ia, ɛn yay. Pɔsin we nɔ gɛt bɛtɛ melanin gɛt layt skin. So, pɔrsin wae gɛt albinism gɛt smɔl melanin prodakshɔn na in bɔdi. Na dat mek dɛn skin ɛn dɛn ia so pale.

Dis pigmɛnt we dɛn kɔl melanin gɛt ɔda impɔtant wok apat frɔm we i de gi kɔlɔ. Dat min se i de ɛp di optik nɛv na wi yay fɔ divɛlɔp fayn fayn wan. So, bɔrku pipul dɛm wae gɛt albinism kin gɛt sɔm kayn pwɛl hat sik.

Yu tink se i kɔrɛkt fɔ kɔl pɔsin ‘albino’?

Yu kin dɔn yɛri pipul dɛm wae gɛt dis sik wae dɛn kɔl "albino." Bɔt as dɔktɔ, wi ɛn bɔku pipul dɛm wae gɛt dis sik kin lɛk fɔ kɔl dɛm "pɔsin wae gɛt albinism." Dat na bikɔs i nɔ fayn fɔ rifer to pɔsin bay in mɛrɛsin kɔndishɔn. Jɔs lɛk aw fɔ kɔl pɔsin we gɛt dayabitis "dayabitis" pas fɔ kɔl am "dayabitis" de gi da pɔsin de rɛspɛkt.

Yu tink se men kayn albinism de?

Yɛs, tu men kayn albinism de. Dɔn bak, albinism kin apin as pat pan sɔm kayn jenɛtik sindrom wae nɔr kin bɔrku. Lɛ wi luk dɛn tin ya wan bay wan.

Albinism wae gɛt fɔ du wit ɔda mɛrɛsin sik dɛm

Na sכm tεm, albinism kin apin as wan fכm fכ כda komplεks jεnεtik sεndrכm dεm, we min se apat frכm albinism, dεn kin gεt simptom dεm bak we de afekt כda bכdi sistεm dεm.

• Hermansky-Pudlak syndrome (HPS): Apat frɔm albinism, dis sik kin mek bak yu gɛt prɔblɛm wit blɔd we nɔ de rɔtin, prɔblɛm wit yu lɔng, kidni, ɔ intestinal .
• Chediak-Higashi syndrome (CHS): Insay dis sik, albinism kin mek di bɔdi in imyun sistɛm wik , we kin mek i kin gɛt infɛkshɔn bɔku tɛm .

Wetin na di men sayn dɛm?

Di kɔndishɔn fɔ albinism kin afɛkt mɔ di we aw di skin, di ia, ɛn di yay de luk, ɛn di we aw i de si.

Kanda

Bɔku tɛm, pipul dɛn we gɛt albinism kin gɛt rili pale skin, bɔt dis kin dipen pan di kayn albinism we dɛn gɛt ɛn di kayn melanin we dɛn bɔdi de mek.

• OCA tayp 1: Di skin kin rili pale, i kin lɛf smɔl fɔ lɛ i wayt.
• OCA tayp 2 ɛn 4: I kin gɛt krim wayt skin.
• OCA tayp 3: Di skin kin tek wan rεdish-brawn kכla.

Ia

Di kɔlɔ na di ia kin difrɛn bak dipen pan di kayn albinism. Sɔm pipul dɛn ia kin wayt ɔl. Ɔda wan dɛn kin gɛt layt yɔlɔ, gold, layt brawn, ɔ rɛd ia. כl dis de dipכnt pan di כmכnt כf melanin na di bכdi.

Yay

Ay kɔlɔ kin bi layt blu, hazel, ɔ brawn. Bɔt, albinism nɔ jɔs afɛkt di yay kɔlɔ, bɔt i kin afɛkt bak di we aw pɔsin de si.

• Blurred vision: Fɔ si tin dɛn di we we nɔ klia ɛn we nɔ klia.
• Refractive Errors : Na tin dɛn we kin mek pɔsin nid glas, lɛk fɔ si nia ɔ fɔ si fa.
• Strabismus: I nɔ kin izi fɔ mek yu ɔl tu yay luk di sem say.
• Nystagmus: I de muv kwik kwik wan we yu nɔ ebul fɔ kɔntrol .
• Fɔtofɔbia: Ay we kin tɔn tu blu fɔ si na di san ɔ brayt layt.
• Ridyus dip perception: Nɔ ebul fɔ jɔj di distans to tin dɛn kɔrɛkt wan.

Wetin mek dis kin apin? Dis na sɔntin we pɔsin kin gɛt frɔm dɛn gret gret granpa?

Yɛs, albinism na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks. Dis min se na mama ɛn papa kin gɛt am to pikin dɛn.

difrεn jin dεm de na wi bכdi we de rilet to melanin prodakshכn. difrεns insay dεn jin dεm ya kin mek di melanin prodakshכn bכku.

• Oculocutaneous albinism (OCA) de inhεrit insay wan כtosom rεsεsiv patεn. Fɔ tɔk am simpul wan, fɔ mek pikin gɛt dis sik, dɛn fɔ gɛt di jin fɔ di sik frɔm dɛn mama ɛn papa . If na wan mama ɔ papa nɔmɔ gɛt di jin, di pikin nɔ go gɛt di sayn dɛn. Bɔt dɛn go bi "kɛriɔ" fɔ di jin. Dis min se if dɛn mared wit ɔda pɔsin we gɛt di sik tumara bambay, 25% chans de fɔ mek dɛn pikin gɛt albinism.

• di okul albinism (OA) kin kכmכt frכm wan ‘X-linked’ patεn. biכs i de pas tru di X kromozom, dεn kin si am mכst pan man dεm.

Aw dɛn kin no am ɛn wetin na di tritmɛnt dɛm?

Fɔ no udat i bi

Bɔku tɛm, dɔktɔ kin no dis sik bay we i:

• We dɛn de chɛk yu bɔdi:Yu kin no layt skin, ia, ɛn yay kɔlɔ we dɛn bɔn am ɔ jɔs afta dat.
• Wan kɔmplit ay ɛgzam: Fɔ chɛk fɔ simptom dɛn we gɛt fɔ du wit di yay (lɛk nistagmus ɛn strabismus).
• DNA testing: Sɔntɛnde, dɛn kin du jenɛtik tɛst fɔ kɔnfɔm di patikyula kayn albinism.

Tritmɛnt ɛn manejmɛnt

Bikɔs dis na jɛnɛtik kɔndishɔn, no tritmɛnt nɔ de we go ebul fɔ mɛn dis sik kpatakpata bay we i de mek di bɔdi gɛt mɔ melanin. Bɔt yu kin ebul fɔ mɛn de prɔblɛm wae gɛt fɔ du wit dis sik fayn fayn wan ɛn yu kin liv wɛl bɔdi, nɔrmal layf.

Tu men tin dɛn de we wi fɔ pe atɛnshɔn pan.

1. Kia fɔ di skin (rili impɔtant!) .

• Fɔ protɛkt yusɛf frɔm di san: Nɔ put yusɛf na di san as yu ebul, mɔ bitwin 11 a.m. ɛn 3 p.m.
• Sanskrin: Yuz ɔltɛm sanskrin we gɛt SPF we pas 30 ɔ pas dat we de protɛkt yu frɔm ɔl tu di UVA ɛn UVB rayt dɛn we yu de go na do . Aks yu dɔktɔ fɔ no mɔ bɔt dis.
• Klos fɔ protɛkt yusɛf: Mek yu bi yu abit fɔ wɛr klos we gɛt lɔng sliv, hat, ɛn sanglas we gɛt UV protɛkshɔn.
• Chek yu skin ɔltɛm: Chek yu skin ɔltɛm fɔ si if yu gɛt nyu spat, wɔt, ɔ chenj in kɔlɔ, saiz, ɔ shep. Si dɔktɔ wantɛm wantɛm if yu notis ivin smɔl chenj.

2. Fɔ protɛkt yu yay

• Fɔ go to dɔktɔ we de mɛn yu yay: I impɔtant fɔ mek ɔlman we gɛt albinism go to dɔktɔ we de mɛn yu yay ɔltɛm.
• Ayglas: We yu wɛr di rayt glas ɔ kɔntakt lens fɔ kɔrɛkt di mistek dɛn we yu kin mek we yu nɔ ebul fɔ si.
• Di tin dɛn we kin ɛp pɔsin fɔ si fayn: Dɛn kin yuz tin dɛn lɛk magnifying lens fɔ mek pɔsin si fayn.
• Ɔpreshɔn: Sɔntɛnde dɛn kin du ɔpreshɔn fɔ kɔrɛkt di strabismus.

If yu pikin gɛt albinism...

Na nɔmal tin fɔ mek mama ɛn papa dɛn fil bad ɛn fred we dɛn kam fɔ no se dɛn pikin gɛt albinism. Bɔt if yu sɔpɔt ɛn no di rayt we, yu go ebul fɔ gi yu pikin bɛtɛ layf.

• Tɛl di skul: Tɔk to yu pikin in ticha dɛn ɛn ɛksplen dɛn kɔndishɔn, mɔ di we aw dɛn nɔ de si fayn. Aks fɔ ɛp wit tin dɛn lɛk fɔ sidɔm na di fɔs pat na di klas ɛn fɔ gi dɛn buk dɛn we gɛt big print.
• Gi yu pikin kɔnfidɛns pan insɛf: Bikɔs yu pikin luk difrɛn frɔm ɔda pipul dɛn, dɛn kin provok am ɛn buli am na skul ɛn na sosayti. So, tɔk to yu pikin bɔt dis opin wan frɔm we i smɔl. Mek dɛn gɛt kɔnfidɛns se dɛn go ebul fɔ tɛl yu wetin de na dɛn maynd.
• Mek yu bi yu abit fɔ yuz tin fɔ protɛkt yusɛf frɔm di san:Mek am abit fɔ di wan ol famili fɔ put tin dɛn we de protɛkt dɛn frɔm di san ɛvride. Dɔn i nɔ go fil lɛk se na jɔs sɔntin fɔ di pikin.
• Si yu dɔktɔ ɔltɛm: Mek shɔ se yu de kɛr yu pikin fɔ go chɛk yu pikin ɔltɛm bɔt in skin ɛn in yay.

Fɔ liv wit albinism kin tranga. Bɔt mɛmba se i nɔ de stɔp pɔsin fɔ ebul fɔ du sɔntin, fɔ gɛt sɛns, ɔ fɔ mek i ebul fɔ du wɛl na layf. If dɛn de du di rayt we aw dɛn de manej dɛn ɛn sɔpɔt dɛn, dɛn go ebul fɔ liv fayn ɛn gladi layf jɔs lɛk ɛni ɔda pɔsin.