Yu dɔn ɛva yɛri bɔt MELAS Syndrome? Sɔntɛm nɔto so. Bikɔs na sik we nɔ kin apin so ɔltɛm, we min se dɛn nɔ kin si am bɔku tɛm. Bɔt i rili impɔtant fɔ mek wi no bɔt am. Na bikɔs i kin afɛkt wi nervɔs sistɛm, mɔsul dɛn, ɛn ɔda impɔtant pat dɛn na wi bɔdi. Tide, wi go tɔk bɔt am ditayli, rili simpul, di we we yu go ɔndastand.
Wetin na MELAS Sindrom? Lɛ wi ɔndastand am simpul wan!
Fɔ tɔk am simpul wan, MELAS Syndrome na wan sik we kin apin we di smɔl smɔl pat dɛn we de insay wi sɛl dɛn we dɛn kɔl
mitochondria nɔ de wok fayn. Tink bɔt am lɛk dɛn smɔl smɔl pawa plant dɛn ya we de mek ɛnaji fɔ wi sɛl dɛn. We dɛn pawa plant ya nɔ de wok fayn, di wan ol bɔdi kin fil am. Dɛn kin mek di wɔd MELAS bay we dɛn jɔyn sɔm impɔtant tin dɛm fɔ dis sik:
- Mitochondrial encephalomyopathy: Dis de tɔk bɔt wan sik we de afɛkt di bren ɛn di mɔsul dɛn we gɛt fɔ du wit di maytochondria .
- Laktik asid: Dis na we wan kemikal we dɛn kɔl laktik asid de bɔku na wi bɔdi. Nɔmal wan, laktik asid kin kɔmɔt as bayprodukt we wi yuz di kabɔhaydrɛt we wi de it fɔ mek ɛnaji, bɔt insay dis sik, i kin bɔku pasmak.
- Stroke -layk episod dɛm: Dis na di wan we kin bɔku pas ɔl. I tan lɛk se dɛn gɛt sayn dɛn we fiba strok , bɔt nɔto tru tru strok. Dɛn tin ya kin apin bɔku tɛm.
Dis na
wan jenɛtik kɔndishɔn , we min se na sɔntin we dɛn bɔn wi wit. Bɔt bɔku tɛm, di sayn dɛn kin bigin smɔl leta. Bɔrku pipul kin bigin fɔ sho de sik wae dɛn dɔn pas 20 ia ɔr bifo dat. Bɔt fɔ sɔm pipul dɛn, dɛn sik ya kin apin ivin bifo tɛm, lɛk tu ia afta dat, ɛn fɔ ɔda pipul dɛn, ivin afta dɛn dɔn ol 40 ia.
Aw dis sik kin kɔmɔn?
MELAS Syndrome nɔto wan sik wae kin pasmak. Dɛn se na lɛk
wan pan ɛvri 4,000 pipul dɛn kin gɛt dis sik. Pan ɔl we i kin afɛkt ɛnibɔdi, di spɛshal tin na dat,
na di mama nɔmɔ kin gɛt dis sik. I nɔ de pas frɔm di papa to di pikin.
Wetin na di sayn dɛm wae de sho se yu gɛt MELAS Syndrome?
as wi bin dכn tכk, biכs di maytochכndria de insay kכlכsכl כl di sεl dεm na wi bכdi, MELAS Syndrome kin afekt εni כgan כ tisu. Dis kin mek di sik kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Bɔt fɔ bɔrku pipul dɛm, de sik nɔr kin tranga fɔ mek dɛn gɛt nyurolɔjik sayn dɛm.
Yu kin si dayabitis ɛn yu nɔ de yɛri fayn. Dis na smɔl tin bak fɔ tink bɔt dis sik. Prɔblɛm ɛn simptom dɛm we gɛt fɔ du wit di bren (nyurolɔjik).
Dɛn tin ya kin apin mɔ bikɔs ɔf di episɔd dɛn we tan lɛk strok. Na sɔm tin dɛn we kin apin:- Di chenj dɛn kin apin wantɛm wantɛm na di we aw pipul dɛn de biev .
- Di maynd kin kɔnfyus , i nɔ kin ebul fɔ ɔndastand wetin de apin.
- Fɔ fil se yu ed de tɔn ɔ yu nɔ de balans .
- Wan pat na di bɔdi, fɔ ɛgzampul wan an ɔ in leg, kin paralayz (paralysis) .
- I kin tan lɛk se yu de swɛ ɔ yu de swɛt na wan say na di bɔdi.
- Ed kin kam ɛn go, ɛn sɔntɛnde, i kin chenj di we aw pɔsin de si ɔ tɔk .
- Di fit de kam ( seizures ) .
- Slurred words , i nɔ izi fɔ tɔk.
- di prכblεm dεm we yu de si kin apin – dכbl vishכn כ kכmplit lכs fכ si.
- Fɔ fil wik na wan say na di bɔdi.
If yu gɛt wan ɔr mɔr pan dɛn sik ya wan tɛm, nɔr ignore am. I bɛtɛ fɔ mek yu go to dɔktɔ wantɛm wantɛm.
Di sayn dɛm wae kin afɛkt ɔda pat dɛm na di bɔdi
Apat frɔm di sayn dɛm we gɛt fɔ du wit di bren, dis sik kin afɛkt ɔda pat dɛm na di bɔdi bak.- Short stature – Sɔm pipul kin shɔt pas avrej.
- Ripit tɛm dɛn we pɔsin kin vɔmit .
- Pɔsin we de fil pen na di bɛlɛ .
- A kin fil se a taya bad bad wan , lɛk se a nɔ gɛt di trɛnk fɔ du ɛnitin.
- Muscle cramps , we na filin lɛk se di mɔsul dɛn de twitch.
Wetin mek MELAS Syndrome kin apin? Wetin na di kɔz?
di men rizin fכ dis na sכm chenj dεm na wi jin dεm (jεnεtik vεryushכn) . Yu no, di instrɔkshɔn dɛn we ɔl wi sɛl dɛn nid fɔ wok de na wi DNA . If ɛni chenj, ɔ muteshon de na dis infɔmeshɔn stɔrɔ we dɛn kɔl DNA, di sɛl dɛn nɔ go ebul fɔ wok fayn fayn wan. Na di sem tin kin apin pan MELAS Syndrome. Di impɔtant tin na dat, if yu gɛt MELAS Syndrome, yu kin gɛt da jɛnɛtik chenj de frɔm yu mama.dis de kכz fכ chenj na di DNA na di maytochכndria. Udat de pan denja pas ɔl fɔ dis?
Di men tin we kin mek pɔsin gɛt dis sik na in famili istri . Dis min se if di mama ɔ in fambul na di mama in sayd gɛt dis sik, sɔm risk de fɔ mek di pikin dɛnsɛf gɛt am. Wetin na di prɔblɛm dɛn we kin apin we pɔsin gɛt MELAS Syndrome?
MELAS Syndrome nɔto sɔntin we jɔs de sho sɔm sayn dɛn ɛn stɔp. I kin mek yu gɛt mɔ prɔblɛm dɛn , dat na, ɔda prɔblɛm dɛn we yu gɛt wit yu wɛlbɔdi.- E kin mek yu gɛt disabled intellectual disability ɛn sɔntɛm i kin gɛt dis maynia sik .
- Dayabitis (Dayabitis Mɛlitɔs) .
- Prɔblɛm fɔ yɛri , sɔntɛm ivin nɔ de yɛri fayn fayn wan.
- di mכsul dεm we de apin – tin dεm lεk di mכsul dεm we de spam, we di mכsul dεm de lכs fכ kכntrכl.
- Di tin dɛn we gɛt fɔ du wit di we aw pɔsin de waka ɛn balans .
- I nɔ de si fayn igen .
- Prɔblɛm dɛn we gɛt fɔ du wit di liva .
Kɔmplikeshɔn lɛk dis kin mek i nɔr izi fɔ liv wit dis sik. Aw dɔktɔ dɛn kin no bɔt dis?
If yu gɛt dɛn sik ya, dɔktɔ go aks yu fɔs bɔt yu sik ɛn if ɛnibɔdi na yu famili dɔn gɛt dɛn sik ya (mɛdikal histri). Dɔn dɛn go ɔda difrɛn tɛst dɛn. Test dɛn fɔ no if pɔsin gɛt di sik:
- di jεnεtik tεst dεm: Dis na di tin we de sho εksakכt if di jεnεtik vεryushכn de.
- Imej tɛst: Fɔ ɛgzampul , dɛn kin du MRI (Magnetic Resonance Imaging) skan fɔ si aw di bren de. Dis kin chɛk bak fɔ si if di bren dɔn pwɛl bikɔs ɔf tin dɛn we tan lɛk strok.
- Sεribrospεnal fכluid, urine, εn blɔd tεst: Dɛn tin ya kin chεk tin dεm lεk laktik asid lεvεl.
- di mכsul bayopsi: sכmtεm, if nid de, dεn kin tek sכm sכm mכsul εn egzamin am כnda maykroskכp fכ si if εni chenj de na di maytochכndria.
Wetin na di tritmɛnt dɛm fɔ MELAS Syndrome?
Bɔt i sɔri fɔ no se naw, no mɛrɛsin nɔ de fɔ MELAS Syndrome. Dis min se no mɛrɛsin nɔ de fɔ ɔltɛm. Bɔt sɔm tritmɛnt dɛn de we go ɛp fɔ kɔntrol di sik dɛn ɛn mek yu liv bɛtɛ layf . Dɔktɔ dɛn kin tray fɔ ridyus di impak we dɛn sik ya kin gɛt. Mɛrɛsin fɔ di sayn dɛm:
Yu dɔktɔ kin tɛl yu fɔ tek mɛrɛsin lɛk dɛn wan ya:- Di mɛrɛsin dɛn we de mek pɔsin nɔ gɛt sik: Bɔt di mɛrɛsin we dɛn kin yuz fɔ mek pɔsin sik we dɛn kɔl valproate nɔ fayn fɔ dɛn sik pipul ya, so dɔktɔ dɛn go gi dɛn ɔda fayn mɛrɛsin.
- Coenzyme Q10 ɔ L-carnitine: Dɛn tin ya na tin dɛn we tan lɛk vaytamɛn we dɛn biliv se kin mek di mitochondria dɛn gɛt mɔ ɛnaji ɛn i kin mek di sik go bifo kwik kwik wan.
- L-arginine εn L-citrulline: Dis na amino asid dεm. Risach dɔn sho se dɛn kin ɛp fɔ ridyus di frɛkuɛns we dɛn kin gɛt lɛk strok ɛn ridyus di damej we dɛn kin mek to di bren.
- Insulin ɔ Metformin: If yu gɛt dayabitis, dɛn kin gi yu dɛn mɛrɛsin ya fɔ kɔntrol am.
- Vaysin: Pipul wae gɛt MELAS Syndrome fɔ gɛt dɛn pikin vaysin kwik kwik wan. I impɔtant bak fɔ gɛt di COVID-19 vaysin, flu vaysin, ɛn nyumonia vaysin ɛvri ia, bikɔs infɛkshɔn kin mek dɛn kɔndishɔn wɔs.
Tritmɛnt dɛn we nɔto drɔgs:
Apat frɔm di mɛrɛsin dɛn, di dɔktɔ kin tɔk bak bɔt tin dɛn lɛk:- Wan ɛksesaiz rutin fɔ mek di mɔsul dɛn strɔng ɛn fɔ mek dɛn kɔntinyu fɔ wok.
- If yu nɔ de yɛri fayn, yu kin gɛt ɛp frɔm tin dɛn lɛk kɔklia implant .
If a gɛt MELAS Syndrome, wetin a fɔ ɛkspɛkt?
Bikɔs dis na sik we yu nɔ go ebul fɔ mɛn, yu go gɛt fɔ kɔntrol di sik fɔ di res ɔf yu layf . I nɔ izi, bɔt dɛn kin du am if dɔktɔ advays ɛn sɔpɔt am fayn. Bikɔs dis sik kin afɛkt ɛni ɔgan ɔ tisu na di bɔdi, yu kin nid fɔ gɛt ɛp frɔm wan tim we de kia fɔ wɛlbɔdi biznɛs . Fɔ ɛgzampul:- Di wan dɛn we de stɔdi bɔt nyurolɔji
- Di wan dɛn we de stɔdi bɔt di jɛnɛtiks
- Di wan dɛn we de mɛn di at
- Fyzikal tεrapist dεm – fכ di mכsul εn jכint fכ wok
- Occupational therapists – pipul dɛm wae de ɛp pipul dɛm fɔ du ɛvride woke izi wan
- Spich therapists – fɔ di prɔblɛm dɛn we pɔsin kin gɛt we i de tɔk
- Soshal woka dɛm – fɔ saykilɔjik ɛn soshal sɔpɔt
Apat frɔm dat, we yu jɔyn sɔpɔt grup, dat kin rili ɛp yu ɛn yu famili. Insay dɛn kayn grup ya, yu kin sheb ɛkspiriɛns, gɛt infɔmeshɔn, ɛn gɛt trɛnk fɔ fil frɔm ɔda pipul dɛn we de gɛt di sem kayn tin. Aw lɔŋ yu kin liv wit MELAS Syndrome?
Dis na kwɛstyɔn we bɔku pipul dɛn kin aks. E tranga fɔ gi prɛsis ansa to di kwɛshɔn "Aw lɔŋ pɔrsin wae gɛt MELAS Syndrome kin liv?". Dis na bikɔs i kin difrɛn bad bad wan frɔm wan pɔsin to ɔda pɔsin. Sɔm pipul dɛn nɔ kin gɛt bɛtɛ sayn, sɔm kin gɛt mɔ. Di we aw pipul dɛn kin ansa di tritmɛnt bak kin difrɛn. Ivin insay di sem famili, di kayn sayn dɛm wae de kam ɛn aw di sik kin go bifo kin difrɛn. Bɔt, wi nid fɔ ɔndastand di tru. MELAS Syndrome na wan sik wae kin kil sɔm kayn tin. Dat min se i kin ivin mek pɔsin in layf de pan denja. Na dat mek i impɔtant fɔ no gud gud wan bɔt dis sik ɛn mɛn am di bɛst we aw yu ebul. Yu tink se dɛn go ebul fɔ stɔp dis?
Bɔt i sɔri fɔ no se naw, no we nɔ de fɔ mek dɛn nɔ gɛt MELAS Sindrom bikɔs na wan sik we dɛn kin gɛt na di jɛnɛtiks. Bɔt if pɔsin na di famili gɛt dis sik we i gɛt frɔm in mama ɛn papa, i rili impɔtant fɔ mek di wan dɛn we de na da famili de mit wit pɔsin we de gi advays bɔt in jɛnɛtiks ɛn aks fɔ advays. Dɛn kin gi infɔmeshɔn bɔt di risk fɔ mek pikin dɛn gɛt dis sik tumara bambay ɛn wetin dɛn kin du fɔ mek dɛn nɔ gɛt am. Aw a go tek kia ɔf misɛf as pɔsin we gɛt MELAS Syndrome?
If yu gɛt MELAS Syndrome, i rili impɔtant fɔ mek yu tek kia ɔf yusɛf gud gud wan.- Fɔ fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we. Go na di klinik di rayt tɛm, tek di mɛrɛsin we dɛn gi yu di rayt we. I go mɔs bi se di dɔktɔ go tɛl yu fɔ si am wan tɛm insay di ia.
- Sɔm tɛst dɛn go nid fɔ du ɛvri ia . Fɔ ɛgzampul:
- At kɔndishɔn
- Di shuga we de na di blɔd
- Fɔ yɛri
- Yay
- Yu fɔ stɔp fɔ drink rɔm ɛn smok kpatakpata, bikɔs dɛn tin ya kin pwɛl di maytochondria mɔ.
- Gɛt yu flu shot ɛvri ia, nyumonia shot, ɛn ɔda shot dɛn we yu dɔktɔ tɛl yu fɔ tek di rayt tɛm.
Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?
Na nɔmal tin fɔ fil bad we yu yɛri se yu ɔ yu pikin gɛt maytochondrial sik. Sɔntɛm yu nɔ ivin yɛri bɔt maytochondria bifo. Na dat mek i impɔtant fɔ gɛt klia infɔmeshɔn bɔt MELAS Syndrome ɛn wetin i min fɔ gɛt am. Aks yu mɛdikal tim bɔt ɔl dis. Nɔ ɛva fred fɔ aks kwɛstyɔn. Na sɔm kwɛstyɔn dɛn we yu kin aks:- "Wetin na di simptom ɔ sayn dɛm we de sho se mɛdikal imejensi de kam nia?"
- "If somtin laik dat hapun, a shud kol di dokta o go strait fo imejensi rum?"
- "Ɛni spɛshal it plan de we go ɛp wit dis kɔndishɔn?"
- "Us mɛrɛsin ɔ tritmɛnt yu de rɛkɔmɛnd fɔ mi? Wetin na di sayd ɛfɛkt dɛn we pɔsin kin gɛt?"
- "Mi famili nid fɔ gɛt jenɛtik kɔyl?"
- "A fit fɔ tek pat pan klinik trial?"
- "Yu kin gi advays bɔt sɔpɔt grup we mi ɛn mi famili go atɛnd?"
Aks ɔl di kwɛstyɔn dɛn we yu nid ɛn gɛt di ansa dɛn we yu nid. Gɛt bɔku sɔpɔt we yu nid frɔm yu dɔktɔ dɛn, yu fambul dɛn, ɛn yu padi dɛn. Fɔ fil se dɛn de sɔpɔt yu, ɛn fɔ rili gɛt sɔpɔt, kin mek big difrɛns pan dis joyn. Tin dɛn we wi nid fɔ mɛmba frɔm dis (Take-Home Message) .
Okay, so lɛ wi rikap sɔm pan di impɔtant pɔynt dɛn we wi dɔn tɔk bɔt tide:- MELAS Syndrome na wan jεnεtik kכndyushכn we nכ kin apin bכt siriכs we kin kכmכt frכm di mכtalman in wok we di maytochכndria dεm, di sεl dεm we de prodyuz enεji na wi sεl dεm, nכ de wok fayn.
- I kin mɔs afɛkt di nervɔs sistɛm ɛn di mɔsul dɛn. di men sayn dεm na di kכndishכn dεm we lεk strכk εn di akכmyuleshכn כf laktik asid na di bכdi.
- Dis sik kin kɔmɔt frɔm mama to pikin.
- Pan ɔl we naw nɔr gɛt kɔmplit mɛrɛsin fɔ mɛn am, tritmɛnt dɛn de fɔ kɔntrol di sayn dɛm ɛn fɔ mek yu liv bɛtɛ layf.
- Di sɔpɔt fɔ spɛshal mɛdikal tim, famili sɔpɔt, ɛn sɔpɔt grup dɛn rili impɔtant we yu de liv wit dis sik.
- Nɔ ɛva shem fɔ aks kwɛstyɔn, fɛn infɔmeshɔn, ɛn gɛt di ɛp we yu nid.
MELAS Syndrome kin mek yu fred we yu yɛri di nem. Bɔt di tin we impɔtant pas ɔl na fɔ no gud gud wan, fala dɔktɔ dɛn advays, ɛn fɔ bia wit dis sik wit gud abit. Mɛmba ɔltɛm se nɔto yu wangren de. MELAS sεndrכm, maytochכndria, jεnεtik sik dεm, laktik asidכsis, strכk lεk simptom dεm, nεv sεstem, mכsul sik dεm
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