Yu pikin kin fɔdɔm bɔku tɛm? Ɔ yu kin si am se i nɔ kin izi fɔ am fɔ grap, klaym stej, rɔn, ɔ jomp? Sɔntɛnde, dɛn tin ya na nɔmal tin we kin apin to yɔŋ pikin dɛn we dɛn de gro. Bɔt sɔntɛnde, prɔblɛm kin de wit di mɔsul dɛn we de biɛn dɛn we nid fɔ pe atɛnshɔn. Na dat mek wi go tɔk bɔt wan grup fɔ sik dɛn we kin mek di mɔsul dɛn wik smɔl smɔl.
Wetin na Muscular Dystrophy?
Fɔ tɔk am simpul wan, mɔskul distrofi na wan jenɛral nem fɔ wan grup fɔ sik dɛn we kin mek di mɔsul dɛn na wi bɔdi wik as tɛm de go ɛn we kin mek dɛn nɔ ebul fɔ chenj. Di men tin we kin mek dis apin na we di jin dɛn we de ɛp fɔ mek wi mɔsul dɛn gɛt wɛlbɔdi.
Sɔm pipul dɛn kin gɛt dis sik we dɛn yɔŋ, ɔda wan dɛn nɔ kin sho ɛni sayn te dɛn ol tɛn ɔr fayvtin ia, ɔr ivin big.
Di we aw dis sik kin ambɔg ɛnibɔdi difrɛn. I dipen pan di kayn sik we pɔsin gɛt. Fɔ bɔku pipul dɛn, dis sik kin wɔs smɔl smɔl as tɛm de go. Sɔm pipul dɛn kin ivin nɔ ebul fɔ waka ɔ tɔk igen. Bɔt dis nɔ kin apin to ɔlman . Sɔm pipul dɛn kin liv nɔrmal layf fɔ lɔng tɛm wit sɔm kayn sik wae nɔr kin fayn. So nid nɔ de fɔ panik bifo tɛm.
Wetin na di men kayn dis?
I pas 30 kayn mɔskul distrofi. Bɔt 9 men kayn dɛn de we wi kin si bɔku tɛm. Ɛni kayn de difrɛn pan di jin we de mek i gɛt am, di mɔsul dɛn we i afɛkt, di ej we di sik bigin, ɛn di rit we di sik de go bifo.
| Di Nem fɔ di Sik | Short Diskripshɔn |
|---|---|
| Duchenne mכskul dεstrofi (DMD) . | Dis na di kayn we we pipul dɛn kin gɛt mɔ. I kin afɛkt bɔy pikin dɛn mɔ. I kin bigin bitwin di ej dɛm fɔ 3-5 ia. |
| Becker mכskul dεstrofi | Semweso lɛk Duchenne, bɔt di sayn dɛm nɔr kin so bad. Dis kin apin mɔ pan bɔy pikin dɛn bak. Di sayn dɛm kin sho bitwin di ej dɛm fɔ 11-25 ia. |
| Mayotonik mɔskul distrofi | Di kayn we we kɔmɔn pas ɔl pan big pipul dɛn. Di men sayn na we yu nɔ ebul fɔ rilaks wan mɔsul afta i dɔn kɔntrakt. I kin afɛkt man ɛn uman. I kin bigin insay di 20s. |
| Distrofi we pɔsin kin bɔn wit di mɔsul dɛn | I kin bigin we dɛn bɔn am ɔ jɔs afta dɛn bɔn am. |
| Limb-girdle mɔskul distrofi | I kin afɛkt di mɔsul dɛn we de rawnd di hip ɛn di sholda dɛn. I kin bigin we dɛn ol titi ɔ 20 ia. |
| Facioscapulohumeral mכskul dεstrofi | I kin afɛkt di mɔsul dɛn na di fes, di sholda dɛn, ɛn di ɔp an dɛn. E kin afɛkt pipul dɛm frɔm yɔŋ ej to big pipul dɛm wae dɔn pas 40 ia. |
| Distal mɔskul distrofi | I kin afɛkt di mɔsul dɛn na di an, leg, an, ɛn fut. I kin bigin bitwin 40-60 ia. |
| Okulofarinjial mɔskul distrofi | I kin bigin insay di ia 40 ɛn 50. I kin mek di mɔsul dɛn wik na di fes, nɛk, ɛn sholda, di aylid dɛn kin drɔp (ptosis), ɛn i nɔ kin izi fɔ swɛla (dysphagia). |
| Emery-Dreifuss mכskul dεstrofi | Bɔrku tɛm i kin afɛkt bɔy pikin dɛm ɛn i kin bigin arawnd di ej 10. Apat frɔm we di mɔsul dɛn kin wik, at prɔblɛm kin apin bak. |
Wetin mek dis kayn sik kin apin? (Di tin dɛn we kin mek i apin)
Dis sik kin kɔmɔt frɔm yu mama ɛn papa, ɔr kin kam fɔs pan yu ɔr yu pikin ɛn nɔr gɛt ɛnibɔdi na yu famili. Dis kin apin bikɔs di jin dɛn nɔ fayn .
Tink bɔt dis, dɛn jin ya de tɛl di sɛl dɛn na wi bɔdi fɔ mek di prɔtin dɛn we dɛn nid fɔ du difrɛn wok dɛn. I tan lɛk se na risɛp fɔ it. If wan jin nɔ fayn, di sɛl dɛn kin mek di rɔng prɔtin, smɔl prɔtin pas aw dɛn nid, ɔ wan prɔtin we dɔn pwɛl.
Pipul dεm wae gεt mכsul dεm we gεt mכsul dεm gεt dεfekt na di jin dεm we de mek protin dεm we de mek dεn mכsul dεm hεlty εn strכng. Fɔ ɛgzampul, insay Duchenne ɛn Becker, wan prɔtin we dɛn kɔl distrophin nɔ kin mek bɛtɛ. dis distrofin protin de mek di mכsul dεm strכng εn i de protεkt dεm frכm damej. We dis prɔtin dɔn lɔs, i kin izi fɔ mek di mɔsul dɛn pwɛl ɛn wik.
Aw fɔ no am? (Sayn dɛn)
Di sayn dɛm fɔ bɔrku kayn sik kin bigin fɔ sho wae dɛn smɔl ɔr yɔŋ pipul dɛm. Jɛnɛral wan, pikin we gɛt dis sik kin sho dɛn sayn ya:
- Fɔ fɔdɔm bɔku tɛm
- Fɔ fil se di mɔsul dɛn wik
- Mɔsul dɛn we kin kramp
- I nɔ kin izi fɔ grap frɔm usay yu sidɔm, klaym stej, rɔn, ɔ jomp
- Wach pan tip fut ɔ waddling
I impɔtant fɔ mek wi as mama ɛn papa pe atɛnshɔn to di we aw wi pikin dɛn de muv, mɔ di we aw dɛn de ple. If yu notis ɛnitin we nɔ kɔmɔn, nɔ shem fɔ tɔk to dɔktɔ.
Apat frɔm dat, sɔm pipul dɛn kin gɛt sɔm sayn dɛn bak lɛk:
- Skɔliosis we de mek pɔsin gɛt sik
- Aylid we de drɔp
- Prɔblɛm dɛn we gɛt fɔ du wit at
- I nɔ izi fɔ blo ɔ swɛla it
- Di we aw pɔsin nɔ de si fayn
- Di mɔsul dɛn na di fes wik
Aw di dɔktɔ kin kɔnfirm dis? (Diagnosis) .
Di dɔktɔ go du bɔku tɛst dɛn fɔ no if yu pikin in mɔsul dɛn wik. Fɔs, dɛn go du wan jenɛral ɛgzam fɔ yu bɔdi, aks yu bɔt yu famili mɛdikal istri, ɛn aks yu bɔt di sik dɛn we yu pikin gɛt.
Afta dat, dɛn kin du sɔm tɛst dɛn lɛk dis fɔ pul ɔda tin dɛn we kin mek di mɔsul dɛn wik ɛn fɔ no if pɔsin gɛt di sik.
| Test Nem | Simply put, dis na wetin yu de du... (Simple Explanation) |
|---|---|
| Blɔd tɛst dɛn | di lεvεl dεm fכ sכm εnzym dεm we kin kכmכt na di bכdi we di mכsul dεm dכn pwεl. |
| Ilɛktromayografi (EMG) . | sכm sכm εlektrod dεm de insay di mכsul dεm εn dεn de mכsu di ilektrikal aktiviti we di mכsul dεm de du. |
| Mɔsul bayɔpsi | Dɛn kin tek wan rili smɔl mɔsul wit nidul ɛn chɛk am ɔnda maykroskɔp. dis kin mek wi no us protin dεm we nכ de כ we dεn dכn pwεl. |
| Ilɛktrokardiogram (EKG/ECG) . | dεn de mכsu di at in ilektrikal signal dεm fכ chεk if di at rεt εn ritm de hεlth. |
| Tɛst dɛn we dɛn kin du fɔ tɛst dɛn jɛnɛtiks | We dɛn tɛst blɔd sɛmpul, i pɔsibul fɔ no ustɛm di jin dɛn we nɔ fayn de mek di mɔsul dɛn wik. |
Wetin na di tritmɛnt dɛn?
Naw, no mɛrɛsin nɔ de fɔ mɛn di sik we dɛn kɔl muscular dystrophy. Bɔt bɔku tritmɛnt dɛn de we go ɛp fɔ kɔntrol di sik dɛn, mek layf izi, ɛn gi yu pikin di bɛst kwaliti fɔ liv. Yu dɔktɔ go tɛl yu di tritmɛnt we go fayn pas ɔl bay di kayn sik we yu pikin gɛt.
- Fizik tritmɛnt: Difrɛn ɛksesaiz ɛn strɛch kin ɛp fɔ mek di mɔsul dɛn strɔng ɛn ebul fɔ chenj.
- Ɔkupeshɔn tɛrapi:Dɛn kin tich di pikin aw fɔ du di wok dɛn we i kin du ɛvride (e.g., fɔ drɛs, fɔ rayt) di bɛst we aw dɛn ebul. Dɛn kin tich dɛn bak aw fɔ yuz tin dɛn lɛk wilchia ɛn tik.
- Spich therapy: If yu gɛt prɔblɛm fɔ tɔk bikɔs yu fes ɔ yu trot mɔsul dɛn wik, wi go tich yu izi we fɔ du dat.
- Di mɛrɛsin dɛn we dɛn kin yuz:
- spεsifi k dכg dεm, lεk `Eteplirsen (Exondys 51)`, we de inkrεs distrofin prodakshכn fכ sכm kayn DMD.
- Drug dɛn we de ridyus di mɔsul dɛn we de spam.
- Blɔd prɛshɔn mɛrɛsin fɔ at prɔblɛm.
- stεroyd dεm lεk `Prednisone` kin slo dכn mכsul dεm we dεn dכn pwεl. Bɔt dɛn tin ya gɛt bad bad tin dɛn ɛn dɛn fɔ jɔs yuz dɛn ɔnda dɔktɔ in advays .
- Ɔpreshɔn: Dɛn kin nid ɔpreshɔn fɔ kɔmplikɛshɔn dɛn lɛk spɛshal stenɔsis ɛn at prɔblɛm.
Tin dɛn we yu fɔ tink bɔt we yu de kia fɔ pikin
Na nɔmal tin fɔ mek mama ɛn papa dɛn fil bad we dɛn pikin in trɛnk de stɔp smɔl smɔl ɛn dɛn nɔ ebul fɔ rɔn ɛn ple lɛk ɔda pikin dɛn. Bɔt yu kin ɛp yu pikin fɔ liv gladi at pan ɔl we dis prɔblɛm de mit am.
- Gi yu pikin gud it: If yu it fayn, dat de ɛp yu fɔ gɛt wɛlbɔdi wet. Dis kin ridyus tin dɛm lɛk wae yu nɔr kin ebul fɔ blo fayn.
- Stay active: Exsaiz we nɔ gɛt bɛtɛ impak lɛk fɔ swim kin ɛp fɔ mek yu mɔsul dɛn strɔng. Aks yu fizik thɛrapist bɔt dis.
- Yuz tin dɛn we go ɛp yu: Ɛnkɔrej yu pikin fɔ yuz wilchia, krach, ɛn ɔda tin dɛn if nid de.
- Stay strɔng: Tɔk to yu fambul, padi, ɔr pɔsin we de advays yu bɔt di strɛs, sɔri-at, ɛn vɛks we yu de fil we yu de travul. Dɔn bak, sɔpɔt grup wit ɔda mama ɛn papa dɛn we gɛt pikin dɛn we gɛt dis sik kin bi big tin fɔ mek dɛn gɛt trɛnk.
Dis sik nɔ de afɛkt ɔlman di sem we. Sɔm pikin dɛn kin lɔs dɛn mɔsul trɛnk kwik kwik wan. Ɔda pipul dɛn kin lɔs am kwik kwik wan. So, i impɔtant fɔ tɔk opin wan wit yu pikin in dɔktɔ bɔt in sik ɛn mek wan tritmɛnt plan we go fayn fɔ am.
Mɛsej we dɛn kin kɛr go na os
- Muscular dystrophy na wan sik wae de kam wit jεnεtiks wae de mek di mכsul dεm wik as tεm de go.
- Di fɔs tin dɛn we kin apin to pikin dɛn kin bi we dɛn kin fɔdɔm bɔku tɛm, i nɔ kin izi fɔ grap, ɛn we dɛn kin waka wit dɛn fut.
- Bikɔs bɔku kayn dis sik de, i impɔtant fɔ mek yu go to dɔktɔ fɔ mek yu no di sik kɔrɛkt wan.
- Pan ɔl we dɛn nɔ gɛt kɔmplit mɛrɛsin, fizik tritmɛnt, mɛrɛsin, ɛn ɔda tritmɛnt dɛn kin kɔntrol di sayn dɛn ɛn kɔntinyu fɔ gɛt gud kwaliti layf.
- I rili impɔtant fɔ gi saykilɔjik sɔpɔt ɛn fayn ples fɔ di pikin ɛn in famili. Tɔk to yu dɔktɔ bɔt ɛnitin we de mɔna yu.
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