Ɛnibɔdi na yu famili ɔ pɔsin we yu sabi gɛt SMA, ɔ Spinal Muscular Atrophy ? Yu kin de wɔnda, ɛn sɔntɛm yu kin ivin fred, aw dis go chenj as tɛm de go, ɛn aw de sik go wɔs. Infakt, di we aw dis sik kin go bifo kin difrɛn frɔm wan pɔsin to ɔda pɔsin. I dipen pan uswan pan di 4 kayn SMA yu gɛt, ustɛm di sayn dɛm fɔs bigin, ɛn us lɛvɛl fɔ divɛlɔp yu bɔdi da tɛm de. Lɛ wi tɔk bɔt dis simpul ɛn klia wan tide.
Aw SMA sik kin go bifo?
Dis sik kin afɛkt mɔ di mɔsul dɛm na di midul pat na di bɔdi, lɛk di bak ɛn di hip dɛm. dis kin kכmכt pas di mכsul dεm we de fa frכm di sεntrכm pat na di bכdi (lεk di finga dεm εn di fut dεm).
Tink bɔt dis we, di mɔsul dɛn na yu shɔl, we de ɛp yu fɔ tinap, kin wik pas di mɔsul dɛn na yu leg. Dɔn bak, yu leg dɛn kin wik bifo yu an dɛn.
Sɔm pipul dɛn kin si bak se dɛn nɔ gɛt trɛnk na dɛn an smɔl smɔl. Bɔt bɔku tɛm, na di an dɛn kin gɛt mɔ trɛnk as tɛm de go. Ivin if di an dɛn wik, dɛn kin stil ebul fɔ du wok dɛn we dɛn kin du ɛvride , lɛk fɔ yuz kɔmpyuta.
Wan ɔda big prɔblɛm we kin kam wit SMA na wan kɔba spayna , we wi kin kɔl skɔliosis pan mɛrɛsin . Bɔrku pikin dɛm wae gɛt SMA kin gɛt dis sik kwik kwik wan. Dis na bikɔs di mɔsul dɛn we de sɔpɔt di spayna kin wik smɔl smɔl.
Bikɔs skɔliosis kin mek i nɔ izi fɔ blo, i rili impɔtant fɔ tɔk to yu dɔktɔ bɔt dis ɔltɛm ɛn fala di instrɔkshɔn dɛn we yu nid.
Pɔrsin wae gɛt skɔliosis kin gɛt dɛn sik ya:
- Sholda ɛn hip nɔ de na di sem lɛvɛl.
- Wan sholda big ɔ i de kɔmɔt bifo pas di ɔda wan.
- Wan hip ay pas di ɔda wan.
Dis kɔba we di spayna de kɔba kin mek i nɔ fil fayn ɛn i kin mek i fil pen. If di kɔv siriɔs, i kin kɔmprɛs di lɔng dɛn ɛn afɛkt di we aw pɔsin de blo. Bɔku tɛm, dɔktɔ dɛn kin tray fɔ kɔntrol di sik bay we dɛn de yuz spɛshal bres we dɛn nɔ gɛt ɔpreshɔn te di pikin dɔn ful-ɔp. Bɔt bikɔs di kɔba we di spayna de kɔba kin wɔs as tɛm de go, yu dɔktɔ go rili pe atɛnshɔn to ɛni prɔblɛm we de wit yu brith ɔ muvmɛnt we go apin pan dis.
Wetin go apin nɛks de dipen pan di kayn SMA we yu gɛt.
Tayp dɛm fɔ SMA ɛn dɛn nature
Dɛn sheb SMA to 4 men kayn dɛn. Dɛn kin sheb dɛn tin ya bay di ej we di sik bigin ɛn di sikman in peak fyzikal aktiviti. Lɛ wi luk ɛni wan pan di kayn dɛn wan bay wan.
| SMA Tayp | Di ej we di sik bigin fɔ gɛt | Ki ficha ɛn go bifo |
|---|---|---|
| Tayp 1 (Werdnig-Hoffmann sik we dɛn kɔl Werdnig-Hoffmann sik) | We dɛn bɔn am ɔ bifo 6 mɔnt | I rili bad. If pɔsin nɔ gɛt tritmɛnt, i nɔ kin izi fɔ sidɔm ɔ kɔntrol in ed. I nɔ kin izi fɔ gi milk ɔ swɛla it. I tan lɛk se pɔsin de blo frɔm in bɛlɛ. Sivεr infεkshכn dεm na di rεspiretכri kin apin bכku tεm. |
| Tayp 2 we de na di wɔl | Bitwin 6 ɛn 18 mɔnt | I kin sidɔm, bɔt i nɔ kin ebul fɔ waka if i nɔ ɛp am. As dɛn de ol, dɛn kin nid ɛp ivin fɔ sidɔm. Dɛn kin si pɔsin we de shek shek. |
| Tayp 3 we yu de du (Kugelberg-Welander di sik we dɛn kɔl Kugelberg-Welander) | Afta 18 mɔnt ɔ we i yɔŋ | A kin ebul fɔ waka. Bɔt as tɛm de go, bɔku tɛm a kin fɔdɔm, i kin at fɔ klaym ɛn kam dɔŋ stej. I nɔ kin izi fɔ grap bak afta yu dɔn ledɔm na grɔn. |
| Tayp 4 | We dɛn ol 20-30 ia (we dɛn dɔn big) . | At fɔ si. Di sayn dɛm kin kam kwik kwik wan. Big pipul dɛn kin ebul fɔ waka, bɔt di mɔsul dɛn kin wik as dɛn de ol. |
Smɔl mɔ bɔt Tayp 1
Dis na di kayn we aw SMA kin rili bad. Dɛn kin kɔl am bak di sik we dɛn kɔl Werdnig-Hoffmann . Dɛn kin no am we dɛn bɔn am ɔ insay di fɔs 6 mɔnt. We di mɔsul dɛn wik kin go bifo kwik kwik wan. If dɛn nɔ gɛt tritmɛnt, di pikin nɔ go ebul fɔ sidɔm ɔ tinap.
di pikin kin gεt bכku bכku bכku bכku tin dεm biכs i kin at fכ sכk εn swεl. Sɔm pikin dɛn kin tan lɛk se dɛn de blo tru dɛn bɛlɛ . dis na biכs di mכsul dεm we de fכ blo na di chεst nכ de wok fayn, so dεn de yuz di dayafragm nכmכ de brith. Dis kin mek yu gɛt siriɔs prɔblɛm wit yu briz ɛn infɛkshɔn ɔltɛm, sɔmtɛm i kin mek yu layf de pan denja.
Smɔl mɔ bɔt Tayp 2
Dɛn kin no dis kayn sik bitwin 6 ɛn 18 mɔnt. Di rit we di sik kin go bifo kin difrɛn bad bad wan frɔm wan pikin to ɔda pikin. Pikin dɛn we gɛt Tayp 2 kin sidɔm we dɛn nɔ gɛt ɛni ɛp we dɛn bigin. Bɔt we dɛn rich dɛn tɛn ia, i kin at fɔ lɛ dɛn sidɔm we dɛn nɔ gɛt ɛnibɔdi fɔ ɛp dɛn.
Dɔn bak, dɛn pikin ya nɔ kin ebul fɔ waka pas sɔm stɛp dɛn if dɛn nɔ ɛp dɛn. Bɔku tɛm, dɛn finga dɛn kin bigin fɔ shek (tremor). Ivin di tεndon rεflεks kin lכs we di dכkta tap di kכn wit sכm hama.
Smɔl mɔ bɔt Tayp 3
Dɛn kin kɔl dis bak Kugelberg-Welander syndrome . Dɛn kin no bɔt am arawnd 18 mɔnt, bɔt sɔmtɛm di sayn dɛm kin bigin we i yɔŋ.
di prכgreshכn fכ dis kayn SMA dipכnt pan aw mכch muvmεnt di pikin de lan. Dɛn pikin ya kin lan aw fɔ waka. Bɔt as tɛm de go, dɛn kin bigin fɔ fɔdɔm bɔku tɛm, i nɔ kin izi fɔ dɛn fɔ klaym stej, ɛn i nɔ kin izi fɔ dɛn fɔ grap frɔm we dɛn ledɔm. Jɔs lɛk ɔda kayn SMA, dɛn kin gɛt mɔ prɔblɛm wit di we aw dɛn de blo as dɛn mɔsul dɛn de wik.
Smɔl mɔ bɔt Tayp 4
Dis na di rarest fכm fכ SMA. Dɛn kin no am pan pipul dɛm wae dɔn pas 20 ɔr 30 ia. Di sik kin go bifo smɔl smɔl. Pipul wae gɛt dis kayn tin kin waka wae dɛn dɔn big, bɔt dɛn kin gɛt mɔsul wikɛd smɔl smɔl as dɛn de ol.
Mɛsej we dɛn kin kɛr go na os
- Spinal Muscular Atrophy (SMA) na sik we de mek di mɔsul dɛn wik as tɛm de go. Bɔt, i nɔ de afɛkt di bren. Di pɔsin in sɛns ɛn sɛns de stil nɔmal.
- Di kayn SMA we yu ɔ yu pikin gɛt de sho aw di sik go kwik ɛn aw i go tranga.
- difεlεns fכ brith εn skכliosis na kכmכn kכndyushכn dεm we de asai wit SMA. Dɛn tin ya nid fɔ gɛt spɛshal atɛnshɔn ɛn dɔktɔ fɔ kia fɔ dɛn.
- I rili impɔtant fɔ wok tranga wan wit yu dɔktɔ fɔ mɛn di sik, fɔ go na klinik dɛn di rayt tɛm, ɛn fɔ fala di instrɔkshɔn dɛn we dɛn gi yu.
- Di tritmɛnt dɛn we dɛn de yuz tide dɔn rili ɛp di kwaliti fɔ liv ɛn layf we di wan dɛn we gɛt SMA gɛt, so nɔ ɛva giv ɔp.
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