Yusɛf nɔ de slip na nɛt? Yu kin tos ɛn tɔn fɔ lɔng tɛm afta yu dɔn go slip? Dis na rili prɔblɛm we bɔku pan wi kin gɛt. Bɔt, yu dɔn ɛva tink se dis kayn we aw pɔsin nɔ de slip, kin bi di fɔs sayn fɔ wan sik we nɔ kin apin so ɔltɛm we kin ivin mek pɔsin day? Nɔ wɔri, a nɔ de se yu gɛt dis sik. Na bikɔs dis na sik we nɔ kin bɔku na di wɔl. Bɔt i rili impɔtant fɔ no bɔt dis. So tide wi go tɔk bɔt dis sik we denja ɛn we nɔ kin bɔku.
Wetin na Fatal Famili Inshɔmnia (FFI)?
Pan ɔl we di wɔd "Insomnia" de na in nem, FFI nɔto rili slip dizayd.
FFI na wan rεr jεnεtik dizכrd we de pas dכn frכm jεnereshכn to jεnereshכn tru jin dεm. Fɔ tɔk am simpul wan, na wan sik we wan prɔtin we de na wi bren we de chenj chenj ɛn pwɛl di bren. Dis sik nɔ kin bɔku so masta sabi bukman dɛn se na lɛk 100 pipul dɛn nɔmɔ na lɛk 30 famili dɛn ɔlsay na di wɔl dɔn ripɔt se gɛt di jin we de mek pɔsin gɛt dis sik. So if yu nɔ ebul fɔ slip, di chans fɔ se na bikɔs ɔf FFI na rili smɔl, lɛk wan pan wan milyɔn. Wan nɔ-jɛnɛtik we de bak fɔ di sem sik, we min se i kin apin wantɛm wantɛm fɔ natin. Dɛn kɔl am Sporadic Fatal insomnia (sFI). Masta sabi bukman dɛn stil nɔ no di rayt we aw i kin apin.
Wetin mek dis sik kin apin? Wetin na di kɔz?
di praymar kכz fכ FFI na di mכtεshכn na di jin `PRPN` na wi bכdi. dis jin de kכntro di prodyushכn fכ wan protin we dεn kכl `PrP`. pan ɔl we dɛn nɔ dɔn no di rayt wok we dis protin de du, di chenj we de apin na di jin de mek dis protin fɔm insay wan shep we nɔ kɔrɛkt. Dɔn i kin bi pɔyzin to wi bɔdi.
Jɔs tink bɔt, if instead fɔ put bɔl we gɛt di rayt shep na mashin, wi put bɔl we gɛt difrɛn shep wit spayk, di mashin go stɔp ɛn brok. Dis na wetin de apin na ya bak.
Dɛn pɔyzin prɔtin dɛn ya we nɔ shep fayn kin gɛda smɔl smɔl ɔlsay na wi layf na wan pat na di bren we dɛn kɔl
thalamus . Di thalamus na wan say we de kɔntrol bɔku impɔtant tin dɛn lɛk wi slip, di we aw wi want fɔ it, ɛn di tɛmpracha na wi bɔdi. as tεm de go, we dεn tכxik protin dεm ya de pwεl di thalamus, di damej de mek di simptom dεm fכ FFI de sho. dis jεnεtik mכtεshכn de pas dכn tru jεnereshכn dεm insay wan
כtosom dכminant we. Dis min se yu nid fɔ gɛt wan kɔpi fɔ di jin we dɔn chenj frɔm yu mama ɔ yu papa fɔ mek yu gɛt di sik.
If wan pan yu mama ɛn papa gɛt dis jin muteshon, yu gɛt 50% chans fɔ gɛt am bak. Wetin na di sayn dɛm fɔ dis sik?
Bɔku tɛm, di sayn dɛm fɔ FFI kin bigin fɔ sho
bitwin di ej dɛm we dɛn ol 40 ɛn 60. Pan ɔl we dɛn kin bigin fɔ rili smɔl, dɛn sayn ya kin rili bad kwik kwik wan. Lɛ wi tek wan luk pan wetin na dɛn sayn ya.
Di fɔs sayn dɛm Simptom dɛm wae kin apun afta de sik dɔn go bifo
| Tayp fɔ di simptom | Fɔ ɛksplen |
|---|
| Nɔ ebul slip | Di men ɛn fɔs sayn na dat, wae pɔrsin nɔr kin slip kin wɔs as tɛm de go. |
| Kɔnfyushɔn ɛn i nɔ kin izi fɔ pe atɛnshɔn pan sɔntin | I nɔ ebul fɔ mɛmba ɛn tink gud wan bikɔs di bren dɔn pwɛl. |
| Di chenj dɛn we kin apin na di bɔdi | Ay blɔd prɛshɔn, at bit kwik kwik wan, we i de lɔs in wet we i nɔ ɛksplen, we i de swet pasmak (Hyperhidrosis) , ɛn we i nɔ ebul fɔ kɔntrol di bɔdi in tɛmpracha. |
| Prɔblɛm dɛn we pɔsin kin si ɛn drim | Dabl vishɔn ɛn rili klia, strenj drim, ivin we yu nɔ de slip bɛtɛ. |
| Ataxia we pɔsin kin gɛt | Nɔ ebul fɔ kɔntrol di we aw yu bɔdi de muv, lɛk fɔ stɛp we yu de waka. |
| Di kwaliti dɛn we pɔsin kin gɛt na in maynd | Fɔ si tin dɛm we yu nɔ de si (Hallucinations), fɔ kɔnfyus bad bad wan (Delirium). |
| I nɔ kin izi fɔ swɛla (Dysphagia) . | Nɔ ebul fɔ swɛla it ɔ wata. |
Bɔrku pan dɛn sik ya kin kam wae pɔrsin nɔr kin slip fayn ɛn in bren kin pwɛl. I sɔri fɔ no se bɔku pan di wan dɛn we sik kin day bikɔs dɛn gɛt at atak ɔ ɔda tin dɛn we kin mek dɛn gɛt dis sik
insay 6 to 36 mɔnt (3 ia) frɔm di tɛm we dɛn bigin fɔ gɛt di sik.
Aw dɔktɔ kin no bɔt dis sik?
If yu dɔktɔ sɔspɛkt se yu gɛt FFI, dɛn go du sɔm tɛst fɔ kɔnfirm am.
- Fɔ aks bɔt famili mɛdikal istri: Bikɔs dis na sik we pɔsin kin gɛt frɔm in bɔdi, i rili impɔtant fɔ no if ɛnibɔdi na di famili dɔn gɛt di sem kayn sik.
- Fɔ chɛk yu bɔdi : Dɛn kin tek tɛm chɛk di sayn dɛm.
- jεnεtik tεst : dεn de tεst bכdi sεmpl fכ mכtεshכn na di `PRPN` jin.
- Stɔdi fɔ Slip: Dɛn kin wach aw pɔsin kin slip ɔnda spɛshal tin dɛn na ɔspitul.
- Spinal Fluid Testing: egzamin fכ di sεribrospεnal fכluid we dεn tek fr כm di spεnal kכd .
Sɔntɛnde, if pɔsin day bifo dɛn no di sik, dɛn kin kɔnfɔm FFI bay we dɛn de chɛk di bren we dɛn de du ɔtopsi.
Wetin na di tritmɛnt dɛm fɔ dis?
I impɔtant fɔ tɔk klia wan se naw nɔr tritmɛnt nɔr de na di wɔl wae go ebul fɔ mɛn dis sik kpatakpata.
Di tritmɛnt fɔ FFI de pe atɛnshɔn fɔ manej di sik dɛn ɛn fɔ gi di pɔsin bɔku rilif as i pɔsibul. Bikɔs na sik we nɔ kin bɔku, no standad tritmɛnt nɔ de. Wan tim we gɛt wɛlbɔdi biznɛs, we gɛt nyurolɔjis ɛn saykayatrist, go wok togɛda fɔ no di rayt tritmɛnt fɔ di pɔsin. Di tritmɛnt we dɛn kin gi kin inklud:
- Fɔ gi vaytamɛn ɛn ɔda tin dɛn we de mek pɔsin gɛt tin fɔ it.
- Fɔ gi yu it we balans fayn fayn wan.
- If yu de tek ɔda mɛrɛsin wae de mek yu sik wɔs, stɔp ɔr chenj am.
- Fɔ gi sɔm mɛrɛsin dɛn we de mek pɔsin fil fayn ɔ melatonin fɔ ɛp pɔsin fɔ slip, lɛk aw dɔktɔ tɛl am.
- Fɔ gi advays fɔ mek pɔsin gɛt fridɔm na in maynd .
Fɔ mek di sik nɔ go pas to ɔda pipul dɛn na di famili tumara bambay, di dɔktɔ kin advays ɔl di wan dɛn we de na di famili fɔ mek dɛn du tɛst fɔ no bɔt dɛn jɛnɛtiks.
Ustɛm a fɔ go to dɔktɔ?
A ripit, if yu get trobul fo slip, di chans fo am bi FFI de rili, rili low. So nɔ wɔri bɔt am we yu nɔ nid fɔ wɔri.
Bɔt if yu gɛt prɔblɛm fɔ slip fɔ lɔng tɛm, ɔ if yu gɛt ɔda sayn dɛn lɛk fɔ kɔnfyus ɔ yu nɔ kin ebul fɔ waka wit yu nɔ slip,
go to yu dɔktɔ wantɛm wantɛm. Bikɔs dɛn sayn dɛn de nɔ kin bi FFI, bɔt dɛn kin bi sayn fɔ ɔda sik we dɛn kin trit. So, i rili impɔtant fɔ gɛt di rayt diagnosis ɛn go to di tritmɛnt we yu nid.
Mɛsej we dɛn kin kɛr go na os
- Fatal Familial Insomnia (FFI) nɔto wan sik we kin apin we pɔsin kin slip. Na wan sik we nɔ kin apin so ɔltɛm, we kin kil pɔsin ɛn we kin pwɛl di bren.
- Ivin if yu gɛt prɔblɛm fɔ slip, di chans fɔ mek i bi FFI rili smɔl, so nɔ fɔ ala we yu nɔ nid.
- Di men sayn fɔ dis sik na wae pɔrsin nɔr kin slip fayn, wae kin wɔs as tɛm de go. Apat frɔm dat , nyurolɔjik simptom dɛm lɛk fɔ muv dizayd ɛn kɔnfyushɔn kin apin bak.
- If pɔsin na yu famili gɛt FFI ɛn yu gɛt prɔblɛm wit slip, go to dɔktɔ wantɛm wantɛm.
- If yu gɛt ɛni kayn prɔblɛm we yu de slip fɔ lɔng tɛm ɔ ɔda tin dɛn we gɛt fɔ du wit am, mek shɔ se yu go to yu dɔktɔ fɔ pul ɔda tin dɛn we yu go ebul fɔ mɛn.
Fatal Familial Insomnia, FFI, inshɔmnia, jɛnɛtik sik, prion sik, slip prɔblɛm, bren sik
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