Yu ɔ yu pikin gɛt prɔblɛm wit yu yay? Lan bɔt di sik we dɛn kɔl Stargardt!

Yu ɔ yu pikin gɛt prɔblɛm usay yu nɔ ebul fɔ si tin dɛn stret bifo, ɔ yu yay de kam blɔk? Sɔntɛm yu kin si tin dɛn we de arawnd yu, bɔt wetin yu de luk nɔ klia. If yu gɛt sɔm kayn sik lɛk dis, wan tin wae kin mek yu gɛt dis sik na wan sik wae dɛn kɔl Stargardt Disease . Lɛ wi tɔk bɔt dis simpul we we yu go ɔndastand.

Wetin na di sik we dɛn kɔl Stargardt?

Fɔ tɔk am simpul wan, di sik we Stargardt gɛt na wan sik we de afɛkt di pat we impɔtant pas ɔl na wi yay , we na di `macula` . tink bɔt am dis we: if yu yay tan lɛk kamɛra, di `rɛtina` na di mɛmbran we de biɛn di kamɛra, lɛk di fim, usay dɛn de rɛkɔd imej dɛn. di `macula` na wan sכm sכm spכt we rili sεnsitiv rayt na di midul pan di `rεtina`. We wi luk stret bifo, we wi rid buk, we wi luk pɔsin in fes, na dis `macula` de ɛp wi fɔ si tin klia wan. Wi kɔl dis `sɛntral vishɔn` .

We yu gɛt Stargardt Disease, yu ``sεntri vishɔn`` de dכn sכmtεm as tεm de go. sכmtεm, dis kin afekt yu ``pεriferal vishכn`` bak, we na di ebul fכ si tin dεm we de rawnd yu yay.

Yu go mɔs dɔn yɛri bɔt di sik we dɛn kɔl macular degeneration . Na sik wae kin ambɔg ol pipul dɛm, mɔr di wan dɛm wae pas 60. Dɛn kɔl am macular degeneration wae gɛt fɔ du wit ej . Bɔt, di sik we dɛn kɔl Stargardt difrɛn. I kin afɛkt pikin ɛn yɔŋ pipul dɛn we nɔ rich 20 ia yet. Na dat mek sɔntɛnde dɔktɔ dɛn kin kɔl am juvenile macular degeneration . we i afekt di ed dεm na di rεtina, dεn kכl am fundus flavimaculatus .

Naw lɛ wi si wetin mek dis kin apin. wi bכdi gεt wan yכlכ, כyl tin we dεn kכl `lipofuscin` . Nɔmal wan, dis kin kɔmɔt na di bɔdi. Bɔt pan pɔsin we gɛt Stargardt Disease, dis `lipofuscin` de prodyuz pasmak ɔ i nɔ de kɔmɔt fayn. afta dat dis ekstra `lipofuscin` de akכmyuleyt na di `rεtina`. dis de mek di ` foto rεsεpכta dεm`, we na wan spεshal tכp sεnsitiv sεl na di `rεtina`, dεm dεm . As tɛm de go, dis damej kin mek i nɔ de si fayn fɔ ɔltɛm.

Wetin na di sayn dɛm wae de sho se yu gɛt Stargardt Disease?

Stargardt Disease kin mek dɛn chenj ya na yu yay ɛn yu yay:

• We yu si dak ples ɔ say dɛn we nɔ klia we yu de si:We yu luk stret bifo, sɔm ples dɛn kin tan lɛk blak ɔ fɔg.
• Blurred vision : Fɔ si tin klia wan, blurred vision.
• Layt sɛnsitiviti: Fɔ fil se i nɔ izi fɔ si na di san ɔ brayt layt.
• Nyu kɔlɔ blayndnɛs : Pan ɔl we yu bin de si kɔlɔ klia wan, naw yu nɔ ebul fɔ no sɔm kɔlɔ dɛn fayn fayn wan.
• I nɔ izi fɔ ajɔst to smɔl/ay layt: We yu de go wantɛm wantɛm frɔm ples we brayt to dak ples, ɔ we yu de kɔmɔt na dak ples to brayt ples, i kin tek lɔng tɛm fɔ mek di yay dɛn ajɔst.
• Poor nait vision : Nayt vision kin bi less dan bifo.

De impɔtant tin na dat, de sayn dɛm fɔ Stargardt Disease kin kam smɔl smɔl. As tɛm de go, yu kin lɔs ɔlmost ɔl yu sɛntral vishɔn. Bɔt yu kin stil ebul fɔ si sɔm distans kɔmɔt na di sayd dɛm na yu yay (peripheral vision). Bɔt, tin dɛn we de apin stret bifo nɔ go klia.

Wetin na de tin wae kin mek yu gɛt Stargardt Disease?

Stargardt Disease na ``jɛnɛtik kɔndishɔn`` . Dat min se na bikɔs wi jin dɛn chenj. spεshal wan, di men kכz na di chenj na wan jin we dεn kכl ``ABCA4 jin.`` Dis ``ABCA4 jin`` de εp wi `` rεtina`` fכ wok fayn fayn wan.

Dis na `hereditary` . Dat min se i kin pas frɔm mama ɛn papa to pikin dɛn. Stargardt Disease de inhεrit insay wan `ɔtosomal rεsεsiv patεn` . Fɔ tɔk am simpul wan, fɔ mek pikin gɛt dis sik, di mama ɛn papa ɔl tu fɔ gɛt dis chenj `ABCA4 jin`. I nɔ go du fɔ jɔs wan pɔsin gɛt am.

Aw dɔktɔ dɛn kin no bɔt dis? (Diagnosis) .

Ay dɔktɔ kin no if yu gɛt dis sik. I go chɛk yu yay , chɛk yu yay, ɛn chɛk if yu yay gɛt wɛlbɔdi. Yu go nid fɔ tɛl di dɔktɔ ustɛm yu sik bigin ɛn us prɔblɛm yu de gɛt.

Yu kin nid fɔ du sɔm tɛst dɛn bak lɛk dɛn wan ya:

• Ilektroretinografi (ERG): Dis de luk aw yu retina de ansa we layt de kam insay yu yay.
• Fluorescein angiography: Dis na tɛst fɔ si di blɔd vesel dɛn we de insay di yay.Luk, dɛn kin put spɛshal day insay wan vein na yu an ɛn tek pikchɔ dɛn insay yu yay.
• Fɔtografi fɔ di fundus ɛn fɔtografi fɔ di fundus ɔtofluorescent: Dis de tek klia pikchɔ dɛn fɔ yu retina ɛn makula. dis de mek yu si aw di lipofuscin de dכn.
• jεnεtik tεst : Dis kin kכnfכm if mכtεshכn de na di ABCA4 jin.
• Optical coherence tomography (OCT): Dis tan lɛk we dɛn de skan di retina. i kin luk tin dεm lεk di tik we di layεr dεm na di rεtina tik, if lipofuscin de, εn if i dכn pwεl.

Wetin na di stej dɛm fɔ Stargardt Disease?

Yu yay dɔktɔ kin sheb di sik to difrɛn stej dɛm, i kin dipen pan aw i de go bifo. Na dis na aw:

• Stej 1: na dis stej, wan yכlכ tin we dεn kכl lipofuscin de bigin fכ fכm lεk sכm sכm sכm fכm dεm na di makula. Yu kin gɛt sɔm kayn sik wae nɔr kin pasmak, ɔr nɔr kin gɛt ɛni sayn atɔl.
• Stej 2: naw dεn `lipofuscin` spat dεm dεn dכn spre to כda εria dεm na di `rεtina` we de rawnd di `macula.` Bay naw yu kin bigin fכ fil di simptom dεm sכmtεm klia pas aw i bin de bifo.
• stej 3: na dis stej, di `lipofuscin` patikyula dεm we dεn akumulet de bigin fכ kכmכt na di `macula` bak εn bigin fכ damej di `macula`. dis dεn kכl am `atrophy` ( sεl dεm we de day). Dis kin mek di sayn dɛm wɔs.
• Stej 4: Di damej (atrophy) we de pan di makula dɔn rili bad naw. Dis kin mek yu lɔs yu sɛntral vishɔn kɔmplit wan ɔ sɔm pat pan am.

Wetin na di tritmɛnt fɔ Stargardt Disease?

I sɔri fɔ no se naw, no mɛrɛsin nɔ de fɔ Stargardt Disease ɔ ɛni tritmɛnt we go ebul fɔ rivɛns di damej we i de kɔz. Bɔt nɔ wɔri. Yu yay dɔktɔ kin ɛp yu fɔ kɔntrol yu sik dɛn ɛn slo fɔ mek yu nɔ de si fayn. Yu kin du tin dɛn lɛk:

• Nɔ tek supamakit we gɛt vaytamɛn A. Sɔm stɔdi dɔn sho se pipul dɛm wae gɛt Stargardt Disease kin gɛt dis sik kwik kwik wan if dɛn tek tumɔs vaytamɛn A. So, nɔr tek ɛni vaytamɛn A sɔpɔtmɛnt wae yu nɔr tɔk to yu dɔktɔ.
• If yu yuz glas, kɔntakt lens ɛn/ɔ tin dɛn we de ɛp yu fɔ si fayn, dat kin ɛp yu bad bad wan wit di tin dɛn we yu de du ɛvride.
• Lɛf fɔ smok (ɛn ɔda tin dɛn we gɛt nikotin lɛk vaping) kpatakpata. Smok nɔ fayn fɔ yu yay atɔl.
• Wear hat ɔ gud sanglas fɔ protɛkt yu yay we yu de go na do.

Mɛmba se dɛn tin ya nɔto mɛrɛsin. Bɔt, dɛn kin ɛp yu fɔ liv fayn fɔ lɔng tɛm.

Yu tink se dɛn kin mɛn Stargardt Disease?

Naw, no mɛrɛsin nɔ de fɔ Stargardt Disease. Bɔt yu yay dɔktɔ kin ɛp yu fɔ liv wit di sik.

Gud nyus de. Risach pipul dεm de kכntinyu fכ du klinik trial fכ fכn nyu tritmεnt fכ kכndyushכn lεk makyula dεjεnεreshכn (inklud Stargardt Disease). Aks yu yay dɔktɔ if yu kin tek pat pan wan pan dɛn klinik trial ya. If na so, yu kin gɛt di chans fɔ gɛt di laytst tritmɛnt dɛn we dɛn kin tray fɔ du.

Ustɛm a fɔ go to dɔktɔ?

Si dɔktɔ ɔ ɔftalmɔlɔjis jɔs afta yu notis ɛni chenj na yu yay ɔ yu yay. De sayn dɛm wae de sho se yu gɛt Stargardt Disease kin tan lɛk ɔda sik dɛm wae kin kam pan yu yay. So, i rili impɔtant fɔ no ɛn trit ɛni prɔblɛm wit yu yay kwik kwik wan .

Wetin yu kin ɛkspɛkt if yu gɛt Stargardt Disease?

Yu fɔ ɛkspɛkt fɔ lɔs yu sɛntral vishɔn smɔl smɔl. Fɔ bɔrku pipul dɛm, dis lɔs kin apin sloslo, fɔ lɔng tɛm, sɔmtɛm fɔ lɔng lɔng tɛm. Bɔt fɔ sɔm pipul dɛn, i kin apin kwik kwik wan. di kayn mכtεshכn na yu ABCA4 jin kin sho aw kwik εn aw yu de lכs vishכn. Yu yay dɔktɔ go tɛl yu mɔ bɔt dis.

Yu go nid fɔ de chɛk yu yay ɔltɛm . Aks yu dɔktɔ aw ɔltɛm yu fɔ chɛk yu yay ɛn us ɔda tɛst dɛn yu fɔ du.

Aw a go tek kia ɔf misɛf wit Stargardt Disease?

Bɔku tin dɛn de we yu kin du fɔ kia fɔ yusɛf:

• It tin dɛn we gɛt fayn fayn tin dɛn fɔ it. It mɔ vɛjitebul ɛn frut dɛn.
• Ɛksasayz. Fɔ kip yu bɔdi aktif na gud tin fɔ ɔltin.
• Nɔ smok.
• Kɔntrol strɛs.
• Go to yu dɔktɔ in apɔntinmɛnt dɛn di rayt tɛm.

Ustɛm a fɔ go to mi dɔktɔ if a gɛt Stargardt Disease?

Yu yay dɔktɔ go tɛl yu fɔ kɔntinyu fɔ si dɛn. Mek shɔ se yu go pan dɛn de dɛn de. Dɔn bak, if yu gɛt ɛni chenj wantɛm wantɛm na yu yay, ɔ if yu fil ɛni pen ɔ nɔ fil fayn na yu yay, go to yu dɔktɔ wantɛm wantɛm.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ bɔt Stargardt Disease?

If yu gɛt Stargardt Disease, yu kin aks yu dɔktɔ kwɛstyɔn dɛn lɛk dɛn wan ya:

• yu kin sajeht wan sohpot grup fo mi wit oda pipul dem we de na dis situeshɔn?
• A fit fɔ tek pat pan `klinik trayal' ?
• A fɔ tɔk to pɔsin we de advays mi bɔt jɛnɛtiks ? (Dis kin ɛp yu fɔ no if ɔda pipul dɛn na yu famili de pan denja.)
• Yu kin gi mi advays bɔt ɛni tul ɔ we we go ɛp mi fɔ du ɛvride wok izi wan wit lɔw vishɔn ?

Fɔ dɔn, tin dɛn fɔ mɛmba (Take-Home Message) .

Fɔ liv wit Stargardt Disease kin mek yu fred. Enitin wae de afekt yu vision kin get big impakt pan yu. Bɔt nɔto yu wan de. Yu yay dɔktɔ ɛn wɛlbɔdi tim kin ɛp yu fɔ ajɔst to di chenj we yu de si, protɛkt yu yay, ɛn liv sef ɛn kɔmfyut layf.

Pan ɔl we naw, no mɛrɛsin nɔ de fɔ di Stargardt Disease, di wan dɛn we de stɔdi bɔt dis kin luk fɔ nyu tritmɛnt ɔltɛm. If yu want fɔ no mɔ, tɔk to yu dɔktɔ bɔt aw fɔ tek pat pan wan klinik trial. Nɔ giv ɔp!

` Stargardt Sik, Aysayt, Sɛntral Vishɔn, Rɛtina, Makula, Jɛnɛtik Sik