Yu dɔn ɛva notis se sɔm pipul dɛn gɛt yay we rili layt, ɔ dɛn yay gɛt difrɛn kɔlɔ? I nɔ kin izi fɔ dɛn fɔ luk di san, ɔ dɛn yay kin ivin wata. Wan rizin fɔ dis kin bi wan kɔndishɔn we dɛn kɔl ‘okular albinism’, we wi go tɔk bɔt tide. Dis kin tan lɛk strenj wɔd to yu, bɔt i rili impɔtant fɔ no bɔt am.
Wetin na ocular albinism, mi padi?
Fɔ tɔk am simpul wan, ocular albinism na wan kayn albinism. I kin afɛkt yu yay mɔ . We yu gɛt dis sik, di kɔlɔ fɔ yu yay ɛn di we aw yu yay de wok kin afɛkt.
Imajin, wan spɛshal tin de we de gi kɔlɔ to wi yay, skin, ɛn ia, ɛn dɛn kɔl am melanin . Dis pigmɛnt we dɛn kɔl melanin na in de mek dɛn kɔlɔ ya. Nɔto dat nɔmɔ, bɔt dis melanin impɔtant fɔ mek wi yay wok fayn ɛn si fayn. So, pan pɔsin we gɛt ocular albinism, dis melanin nɔ de prodyuz inof na di bɔdi, mɔ insay di yay, ɔ i nɔ de sheb fayn fayn wan ɔlsay na di yay. Bikɔs ɔf dis, sɔm pan di tisu dɛn we de na di strɔkchɔ na di yay, dat na di we aw di yay de fɔm, kin afɛkt, ɛn ɔda prɔblɛm dɛn kin apin. As tɛm de go, dis kin mek i nɔ ebul fɔ si fayn bak .
di tin we impɔtant pas ɔl na dat, melanin nɔto jɔs fɔ gi kɔlɔ, bɔt i rili impɔtant bak fɔ mek di yay wok fayn fayn wan.
Yu tink se kayn tin dɛn de we kin apin to dis?
Yɛs, tu men kayn ɔkul albinism de:
1. OA1: Dɛn kin kɔl dis bak Nettleship-Falls OA.
2. OA2: Dɛn kin kɔl dis bak Åland Ayland ay sik ɔ Forsius-Eriksson OA.
Dis na wan sik we nɔ kin apin we pɔsin kin gɛt we i kam pan jɛnɛtiks. Sɔntɛm yu nɔ go ebul fɔ no frɔm do se yu gɛt am. Bɔt, i kin rili afɛkt di we aw yu de si di wɔl. E fayn fɔ ɔndastand fɔ fil pwɛl hat ɛn frayd bɔt wan sik wae nɔr gɛt ɔr smɔl sayn dɛm wae de na do. Bɔt, dɔktɔ dɛn we de mɛn yu yay ɛn ɔda pipul dɛn we de kia fɔ yu wɛlbɔdi biznɛs kin ɛp yu fɔ fɛn di rayt tritmɛnt.
Wetin na di sayn dɛm fɔ pɔrsin wae gɛt ocular albinism?
Sɔm pipul dɛm wae gɛt ocular albinism kin gɛt wan rili layt blu ɔr grey ayris. Bɔt i pɔsibul bak fɔ gɛt brawn yay. So, yu nɔ go ebul fɔ no dis bay di ay kɔlɔ nɔmɔ.
Ɔda tin dɛn we kin apin to di yay kin bi:
- Nystagmus: Dis na we di yay dɛn de muv kwik kwik wan, we dɛn nɔ de kɔntrol, lɛk se dɛn de dans. Dis kin mek i nɔ izi fɔ pe atɛnshɔn pan wan ples.
- Kɔlɔ we nɔ de si fayn ɔ we yu nɔ de si kɔlɔ: Nɔ ebul fɔ no difrɛn kɔlɔ dɛn fayn fayn wan, ɔ yu nɔ de si sɔm kɔlɔ dɛn.
- Strabismus εn Binocular Vision Dysfunction: Dis na we di yay dεm nכ de pכynt na di sem say, bכt wan yay de tכn na difrεn dairekshכn. dis kin mek yu si dכbl vishכn (baynocular vision dysfunction).
- Blurred vision or double vision: Na we yu nɔ ebul fɔ si klia wan.
- Fɔtofɔbia: I kin rili fil fɔ si di san ɛn brayt layt. Ay dɛn kin bi blu ɛn dɛn nɔ kin ebul fɔ tinap fɔ ivin smɔl layt. Kray wata kin kɔmɔt na di yay.
- Refractive errors: Na dɛn tin ya kin mek wi wɛr glas. Fɔ ɛgzampul, tin dɛn lɛk mayopia ɛn hyperopia.
- Lɔw vishɔn: Sɔntɛnde dis kin tranga fɔ mek yu blaynd ligal, we min se yu nɔ kin si bɛtɛ ivin if yu gɛt glas.
Yu tink se dis kin afɛkt di yay nɔmɔ?
Bɔku tɛm, di ɔkul albinism kin afɛkt di yay. Bɔt wan sayn de we nɔ gɛt natin fɔ du wit di yay. Dat na let-onset sensorineural hearing loss . As di nem sho, dis kin mek i nɔ de yɛri fayn bifo i ol 50. Bɔt i nɔ kin afɛkt ɔlman.
Wetin mek dis tin kin apin? Wetin na di rizin dɛn?
Ocular Albinism na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Fɔ tɔk am simpul wan, na bikɔs ɔf di chenj dɛn we de apin na wi jin ɔ DNA. dis chenj dεm we de apin na di jεnεtiks de afekt spεshal wan di we aw wi bכdi de prodyuz כ sheb melanin.
Tu we dεn de we dεn jεnεtik chenj dεm (mכtεshכn) kin apin:
1. Inhɛrit: Dis min se yu gɛt dis jɛnɛtik chenj frɔm wan ɔ ɔl tu yu mama ɛn papa we bɔn yu. dis dεn kכl am כtosom rεsεsiv inhεritεns .
2. Sporadik - de novo: dis min se di jεnεtik chenj de apin randomly, de novo, we di εmbrayo de divεlכp. I nɔ gɛt frɔm di mama ɛn papa.
Aw dɔktɔ kin no di kɔrɛkt wan bɔt di sik we dɛn kɔl ocular albinism? (Diagnosis) .
We dɔktɔ ɔ ɔftalmɔlɔjis de chɛk yu yay, dɛn kin sɔprayz se yu gɛt ɔkulɔr albinism bikɔs ɔf sɔm chenj dɛn we yu kin si na yu yay. Afta dat, dεn kin yuz sεvεra mεtכd dεm fכ kכnfכm if na tru tru ocular albinism, εn us kayn εn sכbtayp i bi.
Na sɔm sayn dɛm wae yu ay spɛshal dɔktɔ kin si:
- Iris transiluminɛshɔn: .Transillumination na di we aw layt de pas tru di dak ayris na yu yay. biכs di melanin nכ de, di ayris de tכn, we de mek layt pas.
- difrεns bitwin di rεtina: כkul albinism kin mek sכmtεm chenj na di shep fכ wan spεshal pat pan yu rεtina – di pat pan di yay we de εp yu fכ si – we dεn k כl fכvea . Di fovea na di say we wi de si tin rili klia wan. So, dis chenj kin afekt aw di retina de wok.
- difrεns bitwin di strכkchכ na di nεv dεm: If yu gεt ocular albinism, yu go gεt strכkchכ difrεns na di optik nεv , we de kכnekt yu yay to yu bren. Dɛn difrɛns ya kin afɛkt di we aw yu bren de prosɛs di sayn dɛm we yu de si ɛn aw yu de si di wɔl.
Apat frɔm dis, ɔda tɛst dɛn de we kin ɛp fɔ no if yu gɛt ɔkulɔr albinism:
- Blɔd tɛst dɛn
- Test fɔ di jenɛtiks
- Visual evoked potentials (VEP) tɛst we pɔsin kin gɛt
- Optik kohɛrɛns tomografi (OCT) skan
- Slit lamp ɛgzam
Sɔntɛnde, we yu tɛst wan ɔ ɔl tu di mama ɛn papa fɔ pikin we gɛt ocular albinism, dat kin ɛp fɔ no us kayn ocular albinism di pikin gɛt.
Yu tink se dɛn kin mɛn di sik we dɛn kɔl ocular albinism kpatakpata?
Nɔ, i nɔ go ebul fɔ mɛn am kpatakpata. Ocular Albinism na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. Dis min se na di chenj we de apin na wi DNA de mek i apin. So, dεn nכ kin trit di כndalayn jεnεtik kכndishכn.
bכt, mכst imכtant, di ifekt dεm we ocular albinism gεt pan di yay dεm – lεk rεfrεktiv mistek כ strabismus – dεn kin trit dεm bכku bכku wan. Dɛn tritmɛnt ya kin ɛp yu fɔ si fayn, bɔt dɛn nɔr kin chenj di ɔndalayn jɛnɛtik sik.
I nɔ mata us kayn ɔkulɔr albinism yu gɛt, ɛn wetin i kin du, yu ɔftalmolɔg kin gi yu di bɛst infɔmeshɔn bɔt di tritmɛnt dɛn we pɔsin kin gɛt.
Wetin na di impɔtant kwɛstyɔn dɛn we wi fɔ aks di dɔktɔ?
I fayn fɔ aks yu dɔktɔ ɔ yu yay spɛshal kwɛstyɔn dɛn lɛk dɛn wan ya:
- Us kayn ɔkulɔr albinism a gɛt?
- Dis na sɔntin we a gɛt frɔm dɛn mama ɛn papa?
- Yu tink se mi pikin dɛn we a bɔn kin gɛt dis frɔm mi?
- Us tritmɛnt dɛn yu kin advays?
- Ɔda tin dɛn de (e.g., sɔpɔt grup, ɛdyukeshɔn matirial) we kin ɛp mi?
Wetin fɔ ɛkspɛkt if yu gɛt ocular albinism?
Ocular Albinism na wan sik wae de kam wae yu de liv yu layf. Bɔt bɔku tɛm i kin bi "invisible condition" we di ɔda wɔl nɔ de si. Bɔrku pipul nɔr kin no se dɛn gɛt dis sik te dɛn du dɛn yay ɛgzam ɛn dɛn kin si chenj insay dɛn yay. Pipul wae gɛt dis sik kin gɛt dis maynia sik wae de mɛk dɛn nɔr de si fayn .
Pipul wae gɛt ocular albinism nid fɔ kɔntinyu fɔ kia fɔ dɛn yay ɔlsay na dɛn layf. Ɛn, sɔmtɛm, mama ɛn papa dɛn kin no se na dɛn de kɛr di chenj dɛn we de apin na di jɛnɛtiks we kin mek i apin we dɛn pikin gɛt sayn dɛn fɔ dis sik.
Wae yu gɛt ocular albinism kin afɛkt di we aw yu de si di wɔl, bɔt i nɔr nid fɔ stɔp yu fɔ liv yu layf di we aw yu want.
Tritmεnt dεm de wae kin εp yu fכ minimiz כ mεnεj yu sik dεm εn liv wit de ifekt dεm wae dis kכndyushכn gεt. We yu de chɛk yu yay ɔltɛm, dat kin ɛp bak fɔ mek yu yay gɛt wɛlbɔdi.
If yu ɔ yu pikin gɛt ocular albinism, yu kin nid fɔ advatayz fɔ yusɛf fɔ gɛt di tin dɛn ɛn di chans dɛn we yu nid. Tɔk to yu dɔktɔ ɔ pɔsin we sabi bɔt yu yay. Dɛn kin gi yu gayd ɛn sɔpɔt. Yu kin fɛn sɔpɔt bak na di intanɛt kɔmyuniti fɔ pipul dɛm wae gɛt ocular albinism fɔ ɛp yu fɔ ajɔst to yu kɔndishɔn ɛn liv di layf wae yu want. Nɔ wɔri, nɔto yu wan de.
Wetin na di mɛsej we wi want fɔ tek go na os we wi want fɔ tek frɔm dis?
Okay, so naw yu dɔn ɔndastand mɔ bɔt wetin wi dɔn tɔk bɔt tide, Ocular Albinism. Na sɔm impɔtant tin dɛn we yu fɔ mɛmba:
- Ocular Albinism na wan jεnεtik kכndyushכn we de kכz fכ lεk melanin na di yay. Dis kin afɛkt di we aw pɔsin de si ɛn di yay kɔlɔ.
- Di sayn dɛm fɔ dis kin difrɛn. Tin dɛn kin de lɛk fɔ muv di yay (nystagmus), fɔ fil bad to layt (fotophobia), ɛn fɔ nɔ de si fayn.
- Pan ɔl we dɛn nɔ go ebul fɔ mɛn am ɔl, tritmɛnt dɛn de fɔ kɔntrol di sayn dɛn ɛn fɔ mek pɔsin si fayn fayn wan.
- I impɔtant fɔ mek dɛn de chɛk yu yay ɔltɛm ɛn fɔ advays yu bɔt dɔktɔ.
- If yu ɔ yu pikin gɛt dis sik, nɔ panik. If yu gɛt di rayt sɔpɔt ɛn infɔmeshɔn, yu go ebul fɔ liv fayn wit am.
If yu gɛt ɛni ɔda kwɛstyɔn bɔt dis, mek shɔ se yu tɔk to yu dɔktɔ. Stay wit wɛlbɔdi!
` Ocular Albinism, Ocular Albinism, Ay Sik, Vision Impairment, Melanin, Jɛnɛtik Sik, Ay Hɛlth
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