Yu pikin in mɔsul dɛn wik? Dis kin bi Spinal Mɔskul Atrofi (SMA) .

We ɛni mama ɔ papa kin si pikin we dɛn jɔs bɔn de tray tranga wan ɛn bigin fɔ waka, dat kin rili mek ɛni mama ɔ papa gladi. Bɔt sɔntɛnde, wi kin si se sɔm pikin dɛn nɔ gɛt trɛnk ɛn muvmɛnt mɔsul dɛn. Wan rizin fɔ dis kin bi di sik we wi de tɔk bɔt tide we dɛn kɔl Spinal Muscular Atrophy , ɔ SMA fɔ shɔt tɛm. Pan ɔl we dis na siriɔs tɔpik smɔl, i rili impɔtant fɔ mek dɛn no bɔt am di rayt we.

Fɔ tɔk am simpul wan, wetin na Spinal Muscular Atrophy (SMA)?

Spinal Muscular Atrophy (SMA) na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. Na wan kayn nerve cell de kɔntrol di mɔsul dɛn na wi bɔdi. Wi kin kɔl dɛn motoka nyuron dɛn ya . Tink bɔt am lɛk se yu bren na yu men pawa plant. frכm de, dεn mכtal nyuron dεm ya na di ‘waya dεm’ we de kכri ilektrikal signal to di mכsul dεm na yu an εn lεg. insay SMA, dεn mכtal nyuron dεm ya na di spεnal kכd de pwεl εn sכmtεm dεn de wik. we dεn ‘wayr dεm’ wik, di signal dεm we de kכmכt na di bren nכ de rich di mכsul dεm fayn fayn wan. Dis kin mek di mɔsul dɛn kin bigin fɔ kɔntrakt ɛn wik.

I kin afɛkt pikin ɛn big pipul dɛn. Fɔ mek pikin gɛt di sik, di jin we de mek pɔsin gɛt di sik fɔ gɛt frɔm in mama ɛn papa ɔl tu . Na lɛk wan pan ɛvri 50 big pipul dɛn na di kɔmyuniti kin gɛt dis jin. Dis min se pan ɔl we dɛn gɛt di sik jin na dɛn bɔdi, dɛn nɔ de sho di sayn dɛm. Bɔt chans de fɔ mek pikin gɛt dis sik frɔm tu mama ɛn papa we gɛt di sik. Na avrej, lɛk wan pan ɛvri 10,000 pikin dɛn we dɛn bɔn kin gɛt dis sik.

Impɔtant tin na dat, di kayn we aw SMA kin tranga kin difrɛn difrɛn wan bay di ej we di sayn dɛn kin bigin fɔ sho. Jɛnɛral wan, if di sayn dɛm bigin we dɛn smɔl, di sik kin tranga pasmak.

Di men kayn SMA sik ɛn dɛn kwaliti dɛn

Dɔktɔ dɛn kin sheb dis sik to sɔm men kayn dɛn bay di tɛm we di sik bigin ɛn aw i kin tranga. Lɛ wi tek wan luk pan ɛni kayn tin mɔ ditayli.

Wetin mek yu fɔ wɔri bɔt dɛn sayn ya?

As yu si, SMA kin afɛkt mɔ di mɔsul dɛn we de ɛp di bɔdi fɔ muv. Bɔt i nɔ de stɔp de.

• We wi de blo: Di mɔsul dɛn na wi chɛst de ɛp wi fɔ blo ɛn kɔmɔt. We dɛn mɔsul dɛn ya wik, wi nɔ kin ebul fɔ blo fayn. Dis kin mek yu gɛt infɛkshɔn we yu de blo ɔltɛm lɛk nyumonia.
• Fɔ it: Di mɔsul dɛn we de na wi trot ɛn mɔt de ɛp wi fɔ swɛla ɛn sok it. We dɛn wik, pikin nɔ kin ebul fɔ gi pikin milk ɔ swɛla it fayn. Dis kin mek i nɔ gɛt bɛtɛ it.
• di shep we di bכdi de shep: we di mכsul dεm we de εp fכ mek di spayna stret wik, di spayna de bigin fכ kכv (scoliosis). Dis kin mek i nɔ izi fɔ blo.

Ɛni tritmɛnt de?

No mɛrɛsin stil nɔ de fɔ SMA. Bɔt insay di las ia dɛn, di tin dɛn we dɔn apin pan mɛrɛsin sayɛns dɔn mek bɔku nyu tritmɛnt dɛn we go ebul fɔ kɔntrol aw di sik de go bifo ɛn fɔ kɔntrol di sayn dɛn we i de sho.

Fɔ ɛgzampul, tu tritmɛnt dɛn we di US FDA dɔn gri fɔ na:

• Nusinersen (Spinraza) we de na di wɔl.
• Onasemnojεn abeparvεk-xioi (Zolgensma) .

Dis na tritmεnt dεm we rili kכmpleks εn dia we de wok na di jεnεtik lεvεl. I impɔtant fɔ tɔk to yu dɔktɔ bɔt aw dɛn de ɛn aw dɛn de na Sri Lanka.

Impɔtant: Na di spɛshal pɔsin nɔmɔ we de chɛk yu ɔ yu pikin fɔ disayd us tritmɛnt go fayn fɔ yu ɔ yu pikin. Nɔ ɛva disayd fɔ du sɔntin bay di tin dɛn we yu go si na di Intanɛt.

Apat frɔm dat, fisiotɛrapi, ɛksesaiz fɔ blo, advays bɔt it, ɛn if nid de, ɔpreshɔn (e.g., spɛshal fushɔn) de ɛp fɔ mek di pɔsin in kwaliti layf bɛtɛ ɛn fɔ mek i nɔ gɛt prɔblɛm dɛn.