Wetin na Susac Syndrome? Lɛ wi tɔk bɔt am simpul wan.

Yu kin gɛt ed we de at wantɛm wantɛm, yu nɔ kin mɛmba bɛtɛ, ɛn yu kin chenj smɔl na yu yay ɛn yɛri? Sɔntɛm dɛn tin ya kin apin di sem tɛm. Na nɔmal tin fɔ lɛ wi fred we dɛn kayn sayn dɛn de apin wantɛm wantɛm. Tide wi go tɔk bɔt wan sik we nɔ kin apin so ɔltɛm we kin mek pɔsin gɛt dɛn kayn sik ya, bɔt dɛn nɔ kin no am bɛtɛ na wi kɔntri. Dat na di sik we dɛn kɔl Susac Syndrome.

Wetin na Susac Syndrome simpul wan?

Fɔ tɔk am simpul wan, Susac Syndrome na wan sik we pɔsin kin gɛt we i de fɛt insɛf. Tink bɔt wi bɔdi in imyun sistɛm lɛk di ami na wi kɔntri. Di men wok we i de du na fɔ protɛkt wi frɔm jem dɛn we de mek wi gɛt sik. Bɔt sɔntɛnde dis sistɛm kin mek smɔl mistek. Dɔn, bifo i atak di ɛnimi dɛn frɔm do, i bigin fɔ atak di gud sɛl dɛn na wi yon bɔdi. Dis na wetin wi kin kɔl ɔtoimyun sik.

Insay Susac Syndrome, wi imyun sistɛm kin atak di smɔl smɔl blɔd vesel dɛn na di bren, retina, ɛn kɔklia . Dis atak kin mek dɛn blɔd vesel dɛn de swel, ɛn i kin mek di blɔd nɔ flɔ tru dɛn ɔ i kin blok ɔltogɛda. Na dat kin mek yu gɛt dis sik.

Usay dis sik kin mɔna?

Dis sik kin mɔs afɛkt tri pat dɛn na di bɔdi: di bren, di yay, ɛn di yes.

Dis na tin we nɔ kin apin so ɔltɛm. So, i nɔ kin izi fɔ tɔk klia wan ɔmɔs pipul dɛn kin gɛt am. Sɔntɛnde, de sik kin tan lɛk ɔda sik we dɛn kɔl Multiple Sclerosis (MS), so sɔntɛnde ivin dɔktɔ dɛn kin kɔnfyus di tu sik dɛn. So, sɔmtɛm i kin tek sɔm tɛm fɔ gɛt di kɔrɛkt diagnosis.

Wetin na di sayn dɛm wae de sho se yu gɛt Susac Syndrome?

Di sayn dɛm kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin, bɔt dɛn gɛt fɔ du wit di tri men tin dɛm wae wi bin dɔn tɔk bɔt. Lɛ wi si wetin dɛn bi.

Aw dɛn kwaliti dɛn ya kin afɛkt yu?

Dɛn sayn ya nɔ kin apin di sem we fɔ ɔlman. Sɔm pipul dɛn kin gɛt dis sik wan tɛm nɔmɔ insay dɛn layf. Fɔ ɔda pipul dɛm, di sayn dɛm kin kam ɛn go, dɔn kam bak... ɛn so de go. Bɔrku tɛm, de sik kin waks ɛn stɔp fɔ sɔm ia. Na smɔl pipul dɛn nɔmɔ kin gɛt di sik fɔ ɔl tri pan dɛn di sem tɛm we dɛn kin no se dɛn gɛt dis sik.

Wetin mek Susac Syndrome kin apin?

Wi nɔ no yet di rayt tin we mek dis apin. Bɔt wi no se na ɔtoimyun kɔndishɔn. As wi bin dɔn tɔk, wi yon imyun sistɛm de atak di sɛl dɛn we de insay di smɔl smɔl blɔd vesel dɛn na wi bren, retina, ɛn insay yes. Dis atak kin mek dɛn sɛl dɛn de swel. Dɔn dɛn blɔd vesel dɛn de kin blok smɔl ɔ ɔl. We dat apin, dɛn pat dɛn de na di bɔdi nɔ kin gɛt di ɔksijɛn ɛn di tin dɛn we dɛn nid. Na dat kin mek ɔl di sayn dɛm wae wi bin dɔn tɔk bɔt.

Dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa? Udat dɛn de pan big risk?

Nɔ, no pruf nɔ de fɔ se dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa. Bɔt , uman dɛn kin gɛt dis sik lɛk tri tɛm pas man dɛn. Bɔrku tɛm, di sayn dɛm kin bigin bitwin 20 ɛn 40 ia.

Wetin na de prɔblɛm wae kin kam wit dis sik?

Sɔntɛnde, di damej we di yay ɛn yes kin mek we di blɔd vesel dɛn blok kin de sote go.Dis min se i pɔsibul fɔ lɛ yu nɔ si ɛn yɛri sote go. Ɛn, pan ɔl we i nɔ kin apin so ɔltɛm, wan sik we dɛn kɔl dimɛns, we kin mek pɔsin nɔ ebul fɔ mɛmba ɔltin, kin apin bak.

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

Yu dɔktɔ go du bɔku tɛst fɔ no if yu gɛt dis sik.

• Fɔ ɛgzam fɔ yu bɔdi
• Nyurolɔjik ɛgzam
• Ɔftalmɔlɔjik ɛgzam

Apat frɔm dat, yu kin du tɛst lɛk dis bak fɔ no mɔ bɔt yu sik dɛn:

• Magnetic Resonance Imaging (MRI) fכ di bren: dis de mek di dכkta fכ luk fכ wayt spat dεm we dεn kכl ‘snowball lesions’ na di εria we di tu εmisfya dεm na di bren de kכnekt (corpus callosum). Dis na wan patikyula sayn fɔ Susac Syndrome.
• Fluorescein Angiography: Dis na spɛshal tɛst we de chɛk di blɔd vesel dɛn na di retina na di yay. I kin no ɛnitin we dɔn blok na di blɔd vesel dɛn.
• Odiogram: Dis na tɛst fɔ yɛri. I de chɛk if yu kin yɛri sawnd dɛn we nɔ gɛt bɔku frɛkuɛns ɛn if i nɔ izi fɔ yu fɔ ɔndastand di we aw yu de tɔk.

Wetin na di tritmɛnt dɛm fɔ dis?

Di men gol fɔ tritmɛnt na fɔ kɔntrol wi imyun sistɛm, we nɔ de wok fayn. Dɛn kin yuz di imyun suprɛsant fɔ dis. Sɔm ɛgzampul dɛn na:

• Kɔtikosterɔyd (e.g. prɛdnisɔn) .
• Imyunoglobulin we dɛn kin put insay di bɛlɛ (IVIG) .
• Maykofenolayt we dɛn kɔl
• Azatiɔprin we dɛn kɔl
• Sayklɔfosfamid
• Rituximab we dɛn kɔl Rituximab

Dɛn kin gi dɛn mɛrɛsin ya to di bɔdi difrɛn we dɛn. Dɛn kin tek sɔm pan dɛn as pils ɔ kapsul. Dɛn kin gi sɔm as injɛkshɔn. Dɛn kin gi ɔda wan dɛn insay di bɛlɛ (IV) tru salin. Dɛn mɛrɛsin ya de wok bay we dɛn de ridyus di imyun sistɛm we de wok pasmak.

Lan bɔt aw fɔ trit am, aw fɔ wɛl, ɛn aw fɔ si tin

Ɛni bad tin de we di tritmɛnt kin du?

Yɛs, lɛk ɔl di mɛrɛsin dɛn, dis wan kin gɛt difrɛn sayd ɛfɛkt dɛn. So, tɔk to yu dɔktɔ bɔt dis bifo yu bigin fɔ trit yu. If yu gɛt ɛni sayd ɛfɛkt, tɛl yu dɔktɔ bɔt am.

Aw lɔng i go tek fɔ mek i wɛl afta dɛn dɔn trit am?

If dɛn no dis kwik ɛn bigin fɔ trit am kwik, di sayn dɛn kin bɛtɛ kwik kwik wan. Sɔm pipul dɛn kin sik wan tɛm nɔmɔ. Ɔda wan dɛn kin gɛt tin dɛn we kin apin ɔltɛm fɔ lɔng tɛm. Bɔt if dɛn tek di rayt mɛrɛsin we de mek di bɔdi nɔ gɛt di sik, di risk fɔ mek i gɛt di sik bak kin ridyus bad bad wan.

Aw layf go tan lɛk wit dis sik? (Autluk) .

De luk fɔ di wan dɛm wae de gɛt tritmɛnt as soon as di symptoms de sho kin rili fayn. Dis kin mek di bren, yay, ɛn yes nɔ pwɛl sote go. Kɔmplikeshɔn dɛn we kin apin ɔltɛm lɛk we pɔsin nɔ de si fayn ɛn we i nɔ de yɛri, nɔ kin bɔku. Dis nɔto sik we de mek pɔsin in layf de pan denja, pas nɔmɔ if i nɔ kin apin so ɔltɛm. Pan ɔl we i kin afɛkt yu kwaliti fɔ liv, i nɔ kin afɛkt yu layf dairekt wan.

Aw fɔ mek yu nɔ gɛt dis sik ɛn ustɛm fɔ go to dɔktɔ?

No patikyula we nɔ de fɔ mek yu nɔ gɛt Susac Syndrome. Bɔt if yu fala di tritmɛnt plan we yu dɔktɔ gi yu ɛksaktɔli, yu kin mek yu nɔr gɛt di sik bak (flare-ups).

If yu gɛt ɛni wan pan dɛn chenj ya, go to yu dɔktɔ wantɛm wantɛm:

• Chenj na di yay we yu de si
• I nɔ de yɛri fayn igen
• Wan chenj na di ebul fɔ tink ɔ mɛmba
• Wan chenj na di we aw pɔsin de biev ɔ di pɔsin we i bi

Di kwik we dɛn no di sik, na di mɔ yu go ebul fɔ gɛt wɛlbɔdi ɛn mek yu nɔ pwɛl am sote go.

Kwɛstyɔn dɛn we yu fɔ aks yu dɔktɔ

• "A kin kam bak afta mi simptoms improv?"
• "Us kain tritment yu de rekomend fo mi?"
• "Aw lɔŋ a fɔ yuz dis mɛrɛsin ɛn aw?"
• "Wetin na di sayd effekt dɛm fɔ dis mɛrɛsin?"
• "A go nid tin fɔ ɛp fɔ yɛri ɔ fɔ gɛt kɔklia implant?"

Susac Syndrome kin afɛkt yu ɛvride layf. Na nɔmal tin fɔ mek yu fred ɛn wɔri we tin dɛn we yu bin dɔn biliv ɔltɛm, lɛk aw yu de si ɔ yɛri, chenj wantɛm wantɛm. Sɔntɛnde, we yu tɔk to pɔsin we de gi advays bɔt mental wɛlbɔdi biznɛs, dat kin mek yu fil fayn. Mɛmba se, i bɛtɛ fɔ tɛl dɔktɔ jɔs afta yu notis di sayn dɛm, bikɔs kɔmplikeshɔn kin apin. If dɛn trit am kwik kwik wan, dat kin mek i nɔ pwɛl sote go.