Sɔntɛnde, i nɔ kin izi fɔ yu fɔ drayv na nɛt ɔ we layt nɔ de, nɔto so? Ɔ, yu dɔn ɛva krash pan pɔsin we yu nɔ si am de kam yu we? If yu dɔn ɛkspiriɛns dis, di kɔz kin bi wan ay kɔndishɔn we dɛn kɔl `Retinitis Pigmentosa` (RP). Nɔr wɔri, dis nɔto kɔmɔn sik, bɔt i impɔtant fɔ no bɔt am. Lɛ wi tɔk mɔ bɔt am.
Wetin na `Rɛtinitis Pigmentosa` (RP)? Wetin mek i rili impɔtant?
Fɔ tɔk am simpul wan, `Retinitis Pigmentosa` (RP) na jɛnɛral nem fɔ wan grup fɔ ay sik dɛn we kin pas frɔm jɛnɛreshɔn to jɛnɛreshɔn. i kin mεnli afekt di `rεtina` insay yu yay.
Tink bɔt yu yay lɛk ol-fashin fim kamɛra. Di foto we de insay dɛn kamɛra dɛn de, dɛn kin tek am na fim. na so i de, insay yu yay, na di bak, wan rili dilik, layt-sεnsitiv mεmbran de we dεn kכl di rεtina. We di layt we de kɔmɔt na di tin dɛn we wi de si fɔdɔm na di retina, i kin chenj da layt de to ilɛktrik signal. Dɔn dɛn sayn dɛn de go na di bren ɛn wi si se, ‘O, dis na dat, dis na dat.’
So, if di retina nɔ de wok fayn, i tan lɛk se di fim we de na di kamɛra dɔn mɛs. I nɔ mata aw yu de pe atɛnshɔn, di pikchɔ nɔ go kɔmɔt klia wan. Semweso, if yu gɛt retina we sik, ilɛksɛf yu wɛr glas ɔ kɔntakt lens, i go afɛkt di we aw yu de si.
di rεtina gεt spεshal kayn nεv sεl dεm we de rεspכnd to layt. Dɛn kɔl dɛn tin ya foto rɛsɛptɔ sɛl. Tu kayn dɛn de: stik ɛn kɔn. Rod dɛn kin ɛp wi fɔ si we layt nɔ de, mɔ na nɛt. Kɔn dɛn kin ɛp wi fɔ si di kɔlɔ dɛn ɛn fayn fayn tin dɛn klia wan. along wit dεn sεl dεm ya, כda kayn sεl de na di rεtina we dεn kכl rεtina pigmεnt εpitεlium sεl dεm. Ɔl dɛn sɛl ya de wok togɛda ɛn wok togɛda fɔ mek wi si gud gud wan.
rεtinitis Pigmentosa (RP) εn כda inhεrit rεtina sik dεm (IRD) kin kכz bay di chenj dεm na di jin dεm we de mek dεn sεl dεm ya wok fayn, we dεn k כl jεnεtik mכtεshכn . Dis kin mek di sɛl dɛn wik smɔl smɔl ɛn stɔp fɔ wok.
RP nɔto wan sik. Bikɔs na grup fɔ sik dɛn, di we aw pɔsin kin si kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Bɔrku pipul dɛn nɔr kin si bɛtɛ , ɛn sɔm pipul dɛn kin lɔs dɛn yay kpatakpata. Dɛn chenj ya we kin apin to pɔsin in yay kin bigin we i smɔl. Bɔt sɔntɛnde, dɛn chenj ya kin apin so sloslo dat yu nɔ kin ivin notis. Fɔ sɔm pipul dɛn, dɛn nɔ kin si fayn kwik kwik wan. insay sכm kayn RP, di vishכn lכs de stכp na wan sכm lεvεl.
Di tin we impɔtant pas ɔl na dat, Retinitis Pigmentosa kin afɛkt ɔl tu di yay dɛn .
Wetin na di sayn dɛm fɔ RP? Aw i kin afɛkt yu?
Di sayn dɛm fɔ `Retinitis Pigmentosa` nɔ kin apia wantɛm wantɛm. Dɛn kin apia smɔl smɔl. Na sɔm pan de fɔs sayn dɛm wae de sho se yu gɛt dis sik:
- Prɔblɛm dɛn we yu kin si na nɛt: Yu kin si se i nɔ kin izi fɔ yu fɔ si tin dɛn na nɛt, mɔ we di layt nɔ bɔku. Dis kin tranga we yu de waka na strit na nɛt ɔ insay os we layt nɔ de shayn bɛtɛ.
- Prɔblɛm fɔ si na layt we nɔ de shayn: I kin at fɔ si tin klia wan, nɔto jɔs na nɛt, bɔt bak na say dɛn lɛk rum we dak smɔl ɔ fim teater.
- Blaynd spat na peripheral vision: Pan ɔl we yu kin si wetin yu de luk, yu nɔ go ebul fɔ si wetin de rawnd yu, lɛk motoka we de kɔmɔt na di sayd ɔ pɔsin we de kam nia yu. Dis na di rizin we mek sɔm pipul dɛn kin aksidɛntli bɔmp pan tin dɛn.
As tɛm de go, ɔda sayn dɛn kin sho. Dɛn tin ya na:
- Fɔ fil se layt de shayn ɔ flash: Sɔm pipul dɛn kin fil se layt de shayn ɔ dɛn kin fil lɛk laytin.
- tכnel vishכn (We yu gεt כnli sεntri vishכn): Dis tan lεk fכ luk di wכl tru tכb. Yu kin jɔs si wetin de stret bifo yu, ɛn natin nɔ de rawnd yu.
- Fɔtofɔbia - Fɔ fil ɔ nɔ kin fil fayn we yu de shayn brayt layt: Yu yay kin blu ɛn i kin at fɔ si we yu de na di san ɔ brayt layt.
- Fɔ lɔs di ebul fɔ si kɔlɔ: Sɔntɛm di kɔlɔ dɛn nɔ go brayt ɔ klia lɛk aw dɛn bin de.
- Fɔ gɛt smɔl smɔl yay: If i rili bad, yu kin si am bad bad wan.
Impɔtant: If yu gɛt wan ɔ mɔ pan dɛn sik ya, i go fayn fɔ mek yu go to dɔktɔ we de mɛn yu yay kwik kwik wan.
Wetin mek `Retinitis Pigmentosa` de divɛlɔp? Wetin na di rizin we mek dis de apin?
di men kכz fכ `Rεtinitis Pigmentosa` (RP) εn כda `Inherited Retinal Diseases (IRDs)` na sכm chenj dεm `(jεnεtik mכtεshכn)` insay wi jin dεm . dis jin dεm na dεn de prodyuz di sεl dεm na wi `(retina)` εn mek dεn wok fayn fayn wan. So, we sɔm mistek ɔ chenj de na dɛn jin ya, dɛn sɛl dɛn de nɔ kin ebul fɔ wok fayn. As tɛm de go, dɛn sɛl dɛn de kin day smɔl smɔl. Na da tɛm de we pɔsin nɔ de si bɛtɛ smɔl smɔl.
Bikɔs na in pikin dɛn gɛt frɔm dɛn mama ɛn papa dɛn, dɛn kin gɛt dɛn jɛnɛtik chenj ya frɔm dɛn mama ɛn papa. Bɔt nɔr kin min ɔltɛm se yu go gɛt dis sik jɔs bikɔs sɔmbɔdi na yu famili gɛt am. I pɔsibul bak fɔ mek yu gɛt dis sik we nɔr gɛt ɛnibɔdi na yu famili. Na dat mek i impɔtant fɔ tɛst di jɛnɛtiks.
Aw dis tin de apin ɔlsay na di wɔl?
Akɔdin to di statɛstik na Yurop ɛn Amɛrika, wan pan ɛvri 3,500 to 4,000 pipul dɛn kin gɛt `Retinitis Pigmentosa`. Ɔlsay na di wɔl, dɛn se na lɛk tu milyɔn pipul dɛn de sɔfa wit dis sik. Pipul dɛn de we gɛt dis sik na Sri Lanka bak. So, i impɔtant fɔ mek wi no bɔt dis.
Aw dɔktɔ dɛn kin no se yu gɛt Retinitis Pigmentosa (RP)?
If yu sɔspɛkt se yu gɛt RP, yu dɔktɔ go du sɔm difrɛn tɛst fɔ chɛk yu. I rili impɔtant fɔ mek yu de chɛk yu yay ɔltɛm.
Dilated ay egzamin wit vijual fil tɛst
Insay dis, di dɔktɔ we de mɛn di yay ɔ di dɔktɔ we de mɛn di yay kin du dɛn tin ya:
- Dɛn kin tɛl yu fɔ rid di raytin na di wɔl.
- I de tɛl yu fɔ luk sɔntin wit ɔl tu yu yay.
- Dɛn de mɛzhɔ di prɛshɔn we de na yu yay.
- Wan vijual fil tɛst de chɛk yu periferik vishɔn.
- Wach aw di pupil na yu yay de ansa to layt.
- di yay de dilayt bay we yu put ay drop na di yay. Dis kin mek dɛn ebul fɔ chɛk di retina gud gud wan.
- Yu kin tek pikchɔ bak fɔ di retina.
Ilektrorɛtinografi (ERG) tɛst
Dis na spɛshal tɛst. I de mɛzhɔ aw yu retina de ansa we layt de. i de mכsu aw di difrεn sεl dεm na yu rεtina (di rod dεm εn kכn dεm we wi bin tכk bכt) de wok fayn fayn wan. I min fɔ flash difrɛn layt dɛn bifo yu yay. Na pat pan wan grup fɔ tɛst dɛn we dɛn kɔl ɔftalmik ilɛktrɔfisiɔlɔji tɛst. Dɛn tɛst ya kin luk bak aw yu yay ɛn yu bren de prosɛs wetin yu de si.
Optik Kɔhɛrɛns Tomografi (OCT) skan
Dis na tɛst we nɔ de ambɔg pɔsin. dis OCT skan kin mכsu di tik we yu rεtina tik εn analכz di hεlth fכ in layεr dεm. Na wetin yu fɔ du na fɔ luk wan target, ɛn spɛshal kamɛra de tek pikchɔ dɛn insay yu yay.
`Fundus Ɔtofluoresɛns (FAF)` tɛst
dis na bak wan noninvasive ``imaging test`` we de tek pikchכ fכ di yay. I kin gi bɔku infɔmeshɔn bɔt di wɛlbɔdi na di retina. Dɛn kin yuse am fɔ no di sik, fɔ trit am, ɛn fɔ wach di sik.
Apat frɔm dɛn tɛst ya, yu dɔktɔ kin tɛl yu bak se yu fɔ tɛst yu jɛnɛtiks ɛn yu go tɛl yu fɔ du yu jenɛtiks advaysa.Yu kin tɔk bak se yu fɔ go fɛn yu. Bikɔs if yu fɛnɔt ɛksaktɔli wetin de mek yu gɛt RP, yu kin gɛt aydia bɔt aw di sik go biev tumara bambay ɛn if i go afɛkt ɔda pipul dɛn na yu famili. I impɔtant bak fɔ gɛt sɔm nyu tritmɛnt dɛn, fɔ ɛgzampul, jin tɛrapi, ɔ fɔ tek pat pan klinik trial dɛn we gɛt fɔ du wit dis.
Wetin na di tritmɛnt fɔ dis sik `Retinitis Pigmentosa` (RP)? Aw dɛn de manej am?
Infakt, big big advans dɔn de pan di tritmɛnt fɔ Retinitis Pigmentosa (RP) ɛn ɔda IRD dɛn insay di las ia, mɔ wit di prɔmis fɔ nyu tritmɛnt dɛn lɛk jin tɛrapi.
Na sɔm pan di we dɛn fɔ manej RP naw:
- Yuz tin dɛn we de ɛp yu fɔ si smɔl ɛn tin dɛn we de ɛp yu: Difrɛn kayn magnifaya dɛn de, spɛshal glas dɛn, ɛn ivin tin dɛn we gɛt fɔ du wit tɛknɔlɔji we go ebul fɔ no wetin ɔ udat na sɔntin we yu pɔynt to am.
- Fɔ protɛkt yusɛf frɔm di san: I impɔtant fɔ wɛr sanglas ɛn ridyus di we aw yu de si brayt layt, bikɔs sɔntɛnde brayt layt kin mek RP wɔs.
- fכ trit כda kכndyushכn dεm we de fכm: Fכ trit kכndishכn dεm lεk cystoid macular edema (CME) (we de bכku fכ wata na di sεntrכm fכ di rεtina) we kin apin wit RP.
- Tritmɛnt fɔ katarakt: Sɔm pipul dɛn we gɛt RP kin gɛt katarakt. If dis apin, dɛn kin du ɔpreshɔn fɔ pul dɛn.
Lɛ wi lan smɔl bɔt Jin Tɛrapi.
Di US FDA dɔn gri fɔ wan jin tɛrapi prodak we dɛn kɔl voretigene neparvovec-ryzl (Luxturna®) fɔ trit wan patikyula kayn RP. Pipul dεm we gεt mכtεshכn na di tu kכpi dεm fכ di RP65 jin kin bεnεfit frכm dis tritmεnt. כltu, dis spεsifi k tכp RP de כnli fכnshכn pan sכm pipul dεm.
Bɔku klinik trayal dɛn de go bifo naw fɔ jin tɛrapi fɔ ɔda kayn RP ɛn IRD dɛn, so dɛn de op fɔ gɛt mɔ tritmɛnt dɛn tumara bambay.
Fɔ pipul dɛm wae gɛt RP wae rili siriɔs, sɔm kayn tin kin de wae dɛn kin tink bɔt wan divays wae dɛn kɔl retina prosthesis .
we de fכ mek dεn nכ gεt divεlכpmεnt fכ `Retinitis Pigmentosa` (RP)?
Bikɔs bɔku tɛm, Retinitis Pigmentosa na tin we pɔsin kin gɛt frɔm in mama ɛn papa, dɛn nɔ kin ebul fɔ avɔyd am ɔltogɛda.
Bɔt tin dɛn de we yu kin du fɔ mek yu yay gɛt wɛlbɔdi as yu ebul:
- Si dɔktɔ we de mɛn yu yay ɔltɛm fɔ mek dɛn chɛk yu yay. Dis go ɛp yu fɔ no ɛni prɔblɛm kwik kwik wan.
- Wear sanglas ɛn protɛkt yu yay frɔm brayt layt.
- Fɔ fala di we aw yu de liv fayn layf. It fayn ɛn ɛksesaiz sef wan.
Wetin yu kin ɛkspɛkt if yu gɛt RP?
Retinitis Pigmentosa nɔ de go bifo di sem we ɔ di sem rit fɔ ɔlman. Dis na bikɔs bɔku difrɛn jin dɛn de we kin mek i apin. Dipen pan di jin, di we aw di sik kin afɛkt ɛnibɔdi difrɛn. Na dat mek i impɔtant fɔ gɛt jenɛtik tɛst ɛn jenɛtik kɔyl.
Aks yu dɔktɔ bɔt di klinik trial dɛm we dɛn de du naw, sɔpɔt grup dɛm, ɛn di tin dɛm wae de ɛp yu fɔ si.
Ustɛm a fɔ go to dɔktɔ?
As a jenɛral lɔ, go to yu ay dɔktɔ ɔltɛm pan schedule ɔltɛm. Dɔn bak, if yu gɛt nyu sik, ɔ if yu sik de wɔs, go to yu dɔktɔ wantɛm wantɛm. Fɔ ɛgzampul:
- If yu fil se yu vishɔn de wɔs (klia ɔ kala vishɔn).
- If yu gɛt nyu pen ɔr nɔr fil fayn na yu yay.
Mɛmba: Bɔrku kayn Retinitis Pigmentosa de, ɛn nɔr to ɔl kayn wae kin mek pɔrsin nɔr de si fayn fayn wan. Di bɛst we fɔ protɛkt ɛn bɛnifit frɔm yu yay as yu ebul na fɔ du yu yay ɛgzam ɔltɛm ɛn fala yu dɔktɔ in instrɔkshɔn.
Fɔ tɔk smɔl, mɛmba dis! (Mɛsej we dɛn kin tek go na os)
Retinitis Pigmentosa (RP) na wan siriɔs sik we yu nid fɔ tek siriɔs wan. Bɔt if yu no bɔt am ɛn du di tin dɛn we yu nid, yu kin ɛp yusɛf fɔ liv nɔmal layf.
- Nɔr frayd, tɛl yu: If dɛn no se yu gɛt RP, tɛl yu gud gud wan bɔt am. Aks yu dɔktɔ kwɛstyɔn dɛn.
- Chek-ap ɔltɛm: Mek dɛn chɛk yu yay ɔltɛm lɛk aw yu yay dɔktɔ se.
- Jɛnɛtik tɛst ɛn advays: Dɛn tin ya rili impɔtant fɔ ɔndastand yu ɛksaktɔl kɔndishɔn.
- Gɛt sɔpɔt: Tɔk to yu fambul ɛn padi dɛn bɔt dis. Join sɔpɔt grup dɛn if nid de. Nɔto yu wan de.
- Yu fɔ no bɔt nyu tritmɛnt dɛn: Mɛdikal sayɛns de go bifo. Aks yu dɔktɔ bɔt nyu tritmɛnt ɛn klinik trial dɛm.
Bɔku tin dɛn de we yu kin du fɔ protɛkt yu yay. Di tin we impɔtant pas ɔl na fɔ du di rayt tin ɛn nɔ lɛf fɔ gɛt op.
` Rɛtinitis Pigmentosa, RP, yay sik, yay we nɔ de si fayn, nɛt blaynd, jɛnɛtik sik, retina, yay we de si
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