A ɔndastand aw yu fɔ fil bad, shɔk, ɛn nɔ ebul fɔ du natin we yu kam fɔ no se yu pikin gɛt wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl Wolf-Hirschhorn syndrome. Wantɛm wantɛm, yu go gɛt bɔku kwɛstyɔn dɛn na yu maynd, lɛk, ‘Wetin mek dis apin to mi pikin?’, ‘Aw dis apin?’, ‘Wetin a de du naw?’ Nɔ tink se na yu wangren de dis tɛm. Lɛ wi tɔk bɔt ɔltin klia wan ɛn simpul wan.
Wetin rili na Wolf-Hirschhorn Syndrome?
Fɔ tɔk am simpul wan, Wolf-Hirschhorn syndrome na wan sik we nɔ kin apin so ɔltɛm we dɛn bɔn pikin wit. Dɛn kin kɔl am bak `(4p- sindrom)`. Wi bɔdi sɛl dɛn gɛt sɔntin we dɛn kɔl kromozom . Tink bɔt dɛn tin ya as buk dɛn we gɛt di kɔmplit blueprint fɔ aw wi bɔdi fɔ bil. 46 pan dɛn kromozom ya de, insay 23 pe.
Insay Wolf-Hirschhorn syndrome, wan rili smɔl pat pan di kromozom 4 nɔ de. I tan lɛk se dɛn de kɔt wan smɔl pej na wan plana kɔmɔt na di kɔna. Ivin smɔl pat pan di kromozom kin ambɔg di pikin in nɔmal divɛlɔpmɛnt. Di kayn sik ɛn aw di sik kin tranga kin difrɛn frɔm wan pikin to ɔda pikin, i kin dipen pan di sayz fɔ di pat we nɔ de.
Wetin na di rizin we mek dis kayn tin de apin? Na mama ɛn papa dɛn fɔlt dis?
Dis na kwɛstyɔn we bɔku mama ɛn papa dɛn kin aks. Di tin we impɔtant pas ɔl we yu nid fɔ ɔndastand klia wan na ya na dat, bɔku tɛm, dis nɔto sɔntin we kɔmɔt frɔm di mama ɛn papa, ɛn nɔto ɛnitin we di mama ɛn papa fɔlt fɔ.
dis kromozom brεk kin apin as random ivent we di sεl dεm de sheb afta dεn bכn pikin na di bεlε. Dɔktɔ dɛn stil nɔ no bɛtɛ bɛtɛ wan wetin mek dis chenj we kin apin wantɛm wantɛm na di jɛnɛtiks kin apin.
Bɔt, we nɔ kin apin so ɔltɛm, dis sik kin kɔmɔt frɔm wan pan di mama ɛn papa. dis dεn kכl am `balεns translכkeshכn` . dis min se tu כ mכr kromozom dεm na di mama כ papa dεn dכn brok εn chenj ples dεm we dεn de divεlכp. Bɔt bikɔs i balans, di mama ɔ papa nɔ de sho ɛni sayn. Bɔt we da kayn pɔsin de gɛt pikin, chans de fɔ mek di kromozom we nɔ balans go pas to di pikin. if yu want, yu kin du jεnεtik tεst fכ si if yu כ yu patna gεt `balεns translכkeshכn` kכndishכn. Tɔk to yu dɔktɔ fɔ no mɔ bɔt dis.
Wetin na di sayn dɛm wae pɔrsin kin si pan pikin?
Wolf-Hirschhorn syndrome kin afɛkt bɔrku difrɛn pat dɛm na di bɔdi. Dis na di rizin we mek bɔku sayn dɛn de. Nɔto ɔl pikin go gɛt ɔl dɛn sik ya. Di men sayn dɛm na di difrɛn we aw yu fes de luk, di delay fɔ divɛlɔp, intɛlektual disable, ɛn fɔ gɛt sik we de mek i sik.
Lɛ wi luk dɛn sayn ya klia wan na wan tebul.
| Sektɔ we dɛn afɛkt | Kɔmɔn tin dɛn we dɛn kin si |
|---|---|
| Di tin dɛn we pɔsin kin si na in fes |
|
| Grɔw ɛn bɔdi | |
| Nɛvɔ sistɛm ɛn intɛlijɛns | |
| Ɔgan dɛn we de insay di bɔdi |
Aw fɔ no bɔt dis sik?
Sɔntɛnde, yu dɔktɔ kin sɔprayz dis sik bay sɔm tin dɛn na yu pikin in bɔdi we yu de si we yu de skan ɔltra saund ɔltɛm we yu gɛt bɛlɛ. Dɔn bak, sɔm spɛshal blɔd tɛst dɛn (sɛl-fri DNA skrinin) we de naw kin gi klia tin bɔt di prɔblɛm dɛn we de na di kromozom.
Bɔt mɛmba se dɛn tin ya na jɔs skrinin dɛn. I nɔr 100% shɔ se pikin gɛt di sik jɔs bikɔs ɔf wan clue.
Fɔ kɔnfirm di rayt diagnosis, dɛn nid fɔ du patikyula jenɛtik tɛst. pan dεm, di mכst imכtant na di `fluorescence in situ hybridization (FISH)` tεst. dis kin no di lכs fכ wan pat pan di fכs kromozom wit mכr dan 95% akכda. Dɛn kin du dis tɛst bifo dɛn bɔn di pikin ɔ afta dɛn bɔn am.
If dɛn kɔnfyus se yu pikin gɛt Wolf-Hirschhorn syndrome, yu dɔktɔ go tɛl yu fɔ du ɔda tɛst, lɛk fɔ skan, fɔ no ustɛm di ɔda pat dɛn na di bɔdi gɛt di sik.
Aw dɛn kin trit am?
Yu kin fil bad fɔ yɛri dis, bɔt di tru tin na dat, dɛn nɔ dɔn fɛn ɛni tritmɛnt yet we go ebul fɔ mɛn di sik we dɛn kɔl Wolf-Hirschhorn kpatakpata.
Bɔt dat nɔ min se natin nɔ de we wi go ebul fɔ du. Di men gol fɔ tritmɛnt na fɔ kɔntrol di pikin in sik ɛn ɛp am fɔ liv di bɛst layf.
Bikɔs ɔl pikin difrɛn, di tritmɛnt plan go difrɛn frɔm wan pikin to ɔda wan. Bɔrku tɛm, dis tritmɛnt plan go gɛt dɛn tin ya:
| Di we aw dɛn kin trit am | Plan |
|---|---|
| Fizik Tɛrapi ɛn Ɔkupeshɔn Tɛrapi | Fɔ mek di mɔsul dɛn strɔng, fɔ mek dɛn ebul fɔ muv mɔ, ɛn fɔ tren dɛn fɔ du di wok dɛn we dɛn kin du ɛvride fɔ dɛnsɛf. |
| Drug Tɛrapi | Gi mɛrɛsin, mɔ fɔ kɔntrol di sik we yu de fil. |
| Ɔpreshɔn | Ɔspitul kɔrɛkshɔn fɔ di prɔblɛm dɛn we dɛn bɔn pikin lɛk di at ɔ di bren we nɔ fayn. |
| Speshal Ɛdyukeshɔn | Fɔ gi di pikin ɛdyukeshɔn we fit di pikin in lanin abiliti. |
| Kɔnsul fɔ di Jɛnɛtiks | Fɔ mek di famili ɔndastand di sik ɛn fɔ tɔk bɔt di prɔblɛm dɛn we kin apin we pɔsin mɛn pikin dɛn tumara bambay. |
Fɔ kia fɔ dis pikin na big tim wok. I nid fɔ mek bɔku pipul dɛn ɛp am, lɛk di wan dɛn we de mɛn pikin dɛn, di wan dɛn we de mɛn dɛn bɔdi, ɛn di wan dɛn we de mɛn pipul dɛn we de tɔk.
Mɛsej we dɛn kin kɛr go na os
- Wolf-Hirschhorn syndrome na wan sik wae nɔr kin bɔrku pan jɛnɛtiks. Bɔku tɛm, i kin apin bikɔs nɔto di mama ɛn papa nɔ fɔlt.
- Di sayn dɛm ɛn di kayn we aw ɛni pikin kin tranga kin difrɛn.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn dis sik ɔltogɛda, bɔku tritmɛnt dɛn de fɔ kɔntrol di sik dɛn ɛn gi di pikin bɛtɛ layf.
- Fɔ dis, di sɔpɔt we wan tim we gɛt dɔktɔ ɛn tritmɛnt pipul dɛn go gi impɔtant.
- Fɔ kia fɔ pikin lɛk dis na prɔblɛm. As mama ɔ papa, i impɔtant fɔ mek yu tek kia ɔf yu yon maynd wɛlbɔdi ɛn gɛt di sɔpɔt we yu nid.
- If yu gɛt ɛni kwɛstyɔn ɔ wɔri bɔt yu pikin in sik, tɔk to yu dɔktɔ opin wan.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt