Yu nɔ de si fayn na nɛt? Yu nɔ ebul fɔ si frɔm ɔl tu di say dɛn? Lɛ wi lan bɔt Retinitis Pigmentosa (RP)!

Yu ɔ yu pikin kin fil lɛk se yu de si smɔl na nɛt? Sɔntɛnde, yu kin mit tin dɛn insay yu os we di layt nɔ bɔku na ivintɛm? Ɔ yu de si motoka dɛn we de kɔmɔt na di tu say dɛn de kam nia yu wantɛm wantɛm we yu de waka na rod? Sɔntɛm yu nɔ bin pe atɛnshɔn tumɔs pan dɛn tin ya. Bɔt dɛn tin ya kin bi sayn dɛn we yu fɔ wɔri bɔt smɔl. Tide wi go tɔk bɔt wan yay sik we kin mek pɔsin gɛt dɛn kayn sayn ya, bɔt we bɔku pipul dɛn na wi kɔntri nɔ rili no bɔt. Dat na Retinitis Pigmentosa, ɔ (RP) fɔ shɔt tɛm.

Fɔ tɔk am simpul wan, wetin na Retinitis Pigmentosa (RP)?

Retinitis Pigmentosa (RP) nɔto wan sik. Na tru tru wan jenɛral nem fɔ wan grup fɔ ay sik dɛn we dɛn kin gɛt frɔm dɛn mama ɛn papa, dat na we dɛn kin gɛt frɔm dɛn jɛnɛtiks. pan dis kכndyushכn, di pat pan yu yay we de sεnsitiv pas כl, na di bak, dεn kכl am di rεtina.

Imajin se yu yay tan lɛk gud kamɛra. Di film rol fɔ dis kamɛra dɛn kɔl am `(Retina)`. we di layt we de kכmכt na do go insay di yay εn hit dis `(Retina)`, dat na di film, i de mek ilektrikal signal dεm εn go na di bren. di bren de intaprit dεn signal dεm lεk pikchכ εn gi wi di filin fכ ‘si’. Naw imajin, ilɛk aw yu kamɛra gud, if di fim we de insay de pwɛl, yu tink se di foto we yu tek go kɔmɔt klia? I nɔ go kɔmɔt na do, nɔto so? Na dat de apin na RP. di sεl dεm na di `(Rεtina)` de wik sכmtεm εn dεn nכ de wok. Dɔn, smɔl smɔl wi nɔ de si igen.

Dis na kɔndishɔn we dɛn bɔn wi wit. Bɔt bɔku tɛm di sayn dɛn kin bigin fɔ sho we dɛn smɔl ɔ we dɛn dɔn yɔŋ. Fɔs, di vishɔn we pɔsin kin si na nɛt kin bigin fɔ stɔp. Dɔn, di periferik vishɔn kin dɔn smɔl smɔl. As tɛm de go, dis vishɔn kin smɔl, ɛn we dɛn ol 40 ia, bɔku pipul dɛn nɔ kin si bɛtɛ. Sɔm kin ivin blaynd we di lɔ se. Bɔt di chenj so bad dat i kin tek sɔm pipul dɛn sɔm tɛm fɔ no se dis na sik.

Wetin dis nem min?

Di nem "Retinitis Pigmentosa" na rili smɔl mistek. Insay mɛrɛsin, if wan wɔd dɔn wit "-itis", i min 'inflammation' ɔ 'inflammation'. Fɔ ɛgzampul, lɛk `(Appendicitis)`. bכt RP nכto inflameshn fכ di `(Rεtina)`. wetin de apin ya na di sεl dεm na di `(Rεtina)` de wik sכmtεm εn atrofi. fכ dat, wan mכr aprכpriet nem fכ dis na `(Retinal Dystrophy).`

So wetin di wod "Pigmentosa" min? I gɛt fɔ du wit dis kɔndishɔn. We di foto rεsεptor sεl dεm na wi rεtina day, dεn de pul wan pigmεnt. dis pigmεnt de dכn na di rεtina. We dɔktɔ de chɛk di yay, i kin si dɛn say dɛn ya we gɛt kɔlɔ. Na dat mek dɛn ad di wɔd "Pigmentosa" to di nem.

Wetin na di sayn dɛm fɔ RP?

As wi bin dɔn tɔk bifo tɛm, dɛn sik ya kin apia smɔl smɔl. Dɛn kin bigin smɔl smɔl fɔ lɔng tɛm. So i kin tranga fɔ no dɛn we dɛn bigin.

Lɛ wi si wetin na dɛn sayn ya. Fɔ ɔndastand klia wan, lɛ wi sheb dis to tu pat.

Wetin mek dis tin kin apin?

Di men rizin fɔ dis na di difrɛns dɛn we de na di jɛnɛtiks . Fɔ tɔk am simpul wan, wi jin dɛn gɛt di kɔmplit tin dɛn we de sho aw dɛn mek wi bɔdi ɛn aw dɛn de wok. Dis tan lɛk di blueprint we dɛn kin yuz fɔ bil os. If chenj ɔ bad tin de na dis blɔk, dat na di jin, dat min se wetin dɛn mek wit am, dat na di pat dɛn na wi bɔdi, nɔ kin gro ɔ wok fayn.

Sayɛnsman dɛn dɔn no se na lɛk 100 kayn chenj dɛn ya we kin apin na di jɛnɛtiks we kin mek pɔsin gɛt RP. Yu kin gɛt dis jenɛtik dɛfɛkt frɔm yu mama ɔ papa. Ɔ, nyu jin muteshon kin apin na yu bɔdi bay chans, ɛn nɔbɔdi nɔ gɛt am na yu famili.

Bikɔs bɔku kayn jin dɛn de, ɛni jin kin pwɛl di retina difrɛn we. Na dat mek RP kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Sɔm pipul dɛn kin lɔs dɛn yay kwik kwik wan. Ɔda wan dɛn kin lɔs dɛn yay kwik kwik wan. Sɔmtɛm RP kin kam wit bɔrku ɔda sayn dɛm ɛn kin apin lɛk ɔda sik, lɛk Usher syndrome.

Wetin rili de apin insay di yay?

Lɛ wi go dip smɔl ɛn si wetin de apin insay di yay. insay di ``Rεtina`` we wi bin tכk bכt, wan spεshal tכp sεl de we de dεtekt layt. Wi kin kɔl dɛn tin ya ``Fotoreceptors``. Dis na di sɛl dɛn we de tek di layt we de go insay di yay, chenj am to ilɛktrik signal, ɛn sɛn am to di bren.

Tu men kayn foto-rɛsɛptɔ dɛn de:

• Rod: Na dɛn tin ya de gi wi vishɔn na dak, dat na, we layt nɔ de. Dɛn nɔ kin ebul fɔ no difrɛns bitwin kɔlɔ, dɛn kin jɔs gi wi blak ɛn wayt vishɔn. plεnti milyan pan dεn `(Rods)` dεm de na wi `(Rεtina)`, spεshal wan na di pεrifεri fכ di `(Rεtina)`, dat na, na di tu say dεm.
• Kɔn: Na dɛn tin ya de ɛp wi fɔ si kɔlɔ ɛn fayn fayn tin dɛn klia wan we wi gɛt gud layt, dat na di de.

Insay RP , bɔku tɛm di rod dɛn kin pwɛl fɔs . Na dat mek di fɔs sayn dɛm na we yu nɔ de si fayn na nɛt ɛn yu nɔ de si di say we yu de si. As tɛm de go, di kɔn dɛn bak kin bigin fɔ pwɛl. Na da tɛm de tin dɛn lɛk fɔ si kɔlɔ ɛn fɔ wok nia yu kin afɛkt.

Aw dɔktɔ kin no bɔt dis sik?

If yu gɛt dɛn sik ya, yu fɔ go to dɔktɔ we de mɛn yu yay (Ophthalmologist). I go chɛk yu yay. If yu de chɛk yu yay ɔltɛm, yu kin no di sayn dɛm fɔ dis sik.

Bɔku tɛst dɛn de we dɛn kin du fɔ no if pɔsin gɛt di sik:

• Visual Field Test: Dis de mekɔp yu peripheral vision, we na aw fa yu kin si to di sayd dɛm. Dis kin ɛp fɔ no if yu gɛt tanɛl vishɔn.
• Slit Lamp ɛn Fɔndoskɔpi: Dɛn kin yuz spɛshal inschrumɛnt fɔ chɛk insay yu yay (rɛtina). Dis kin chɛk fɔ pigmɛnt dipɔsit dɛn we gɛt fɔ du wit RP.
• rεtina imej: dεn kin tek ay rεsכlushכn imej dεm fכ di rεtina fכ stכdi di chenj dεm we de insay am.
• ERG Test (Electroretinogram): Dis na sכm spεshal tεst. wetin dεn de du ya na fכ mכsu di ilektrikal signal dεm we yu `(Retina)` de kכmכt fכ si aw i de ansa to layt. Insay RP, dɛn signal ya kin rili wik.
• Jɛnɛtik Tɛst: Dɛn kin du dis tɛst bay we dɛn tek blɔd sɛmpul ɛn no ustɛm di jɛnɛtik difrɛns de mek di sik.

Wetin na di tritmɛnt dɛm fɔ dis?

Dis na di pat we a et fɔ yɛri. Na ɔnfɔni, no mɛrɛsin nɔ de fɔ Retinitis Pigmentosa yet. Bɔt, nɔ giv ɔp fɔ op. Bɔrku we ɛn we de fɔ ɛp di wan dɛm wae gɛt dis sik ɛn mek layf izi.

Yu dɔktɔ kin rifer yu to vishɔn rihabiliteshɔn savis. Dɛn tin ya kin bi:

• Vision aids - magnifying glass, spɛshal softwe.
• Occupational therapy - Trenin fɔ aw fɔ du ɛvride wok wit pɔsin we nɔ de si fayn.
• Speshal ɛdyukeshɔn ɔ wok savis.
• Grup dɛn we de gi advays ɔ sɔpɔt.

Dis tɛm ya, sayɛnsman dɛn de kɔntinyu fɔ du risach bɔt aw fɔ mɛn dis sik. Naw, sɔm tritmɛnt dɛn de we dɛn dɔn tray fɔ du we dɔn sho fayn fayn tin dɛn:

• Jin Tɛrapi: Dis na di big op. Wetin dɛn de du ya na fɔ tray fɔ kɔrɛkt di jin we nɔ fayn. naw, na wan tritmεnt nכmכ de we dεn apruv fכ wan tכp jin, ``(RPE65)``. Bɔt dɛn de du risach kwik kwik wan fɔ ɔda jin dɛn bak.
• Vitamin A supliment: Insay sɔm kayn RP, dɛn dɔn si se if pɔsin tek di rayt doz fɔ vaytamɛn A, i kin mek di sik slo. Bɔt dis rili impɔtant: Nɔ ɛva tek vaytamɛn A we yu nɔ go to yu dɔktɔ. Sɔm pipul dɛn kin gɛt bad bad tin fɔ it we dɛn tek bɔku vaytamɛn A. So dis na disizhɔn we na yu dɔktɔ nɔmɔ fɔ disayd.
• Retina Prosthesis: Dis na ilɛktronik tin we dɛn kin put insay di yay. I kin gi sɔm vishɔn. Bɔt di tin dɛn we kin apin kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Yu kin aks yu dɔktɔ if dis na fayn tin fɔ yu.