Wetin na di sik we dɛn kɔl Huntington? Lɛ wi tɔk bɔt am simpul wan.

Wi nɔ kin jɔs gɛt di we aw wi de luk ɛn wi talɛnt frɔm wi mama ɛn papa, bɔt sɔntɛnde wi kin gɛt sik dɛn bak. Di sik we dɛn kɔl Huntington na siriɔs wan we kin afɛkt di nerve cells na di bren ɛn i kin pas frɔm wan jɛnɛreshɔn to ɔda jɛnɛreshɔn . Yu kin fil fɔ fred we yu yɛri dis nem, bɔt i rili impɔtant fɔ no bɔt am. So tide, lɛ wi tɔk bɔt am simpul ɛn ɔndastand.

Wetin rili na di sik we dɛn kɔl Huntington’s Disease?

Fɔ tɔk am simpul wan, di sik we dɛn kɔl Huntington na wan sik we pɔsin kin gɛt we i kam pan jɛnɛreshɔn to ɔda jɛnɛreshɔn. I kin mek di nɛv sɛl dɛn na di bren day smɔl smɔl. As tɛm de go, dis kin mek wi chenj di we aw wi de muv, di we aw wi de tink, ɛn ivin di we aw wi de fil. Dis kin mek yu gɛt mɔr prɔblɛm wit yu maynd wɛl bɔdi prɔblɛm lɛk pwɛl hat ɛn wɔri.

Pan ɔl we di sik kin bigin pan ɛni ej, di sayn dɛm kin sho bɔku tɛm bitwin di ej dɛm we dɛn ol bitwin 30 ɛn 40. Bɔt if di sik bigin we dɛn smɔl, ɔ bifo dɛn rich 20 ia, dɛn kin kɔl am di sik we dɛn kɔl juvenile Huntington’s disease (JHD).

Na nɔmal tin fɔ fil bad we yu lan bɔt sik lɛk dis. Bɔt fɔ gɛt ɛp frɔm sɔshal woka, advaysa, ɔr sɔpɔt grup fɔ pipul dɛm wae de liv wit dis sik kin bi big ɛp fɔ bia wit dis kayn tin. If wan tim we gɛt bɔku bɔku pipul dɛn we sabi bɔt mɛrɛsin kin ɛp am, ivin pɔsin we gɛt di sik we dɛn kɔl Huntington kin liv fɔ lɔng tɛm fɔ insɛf.

Wetin kin mek pɔsin gɛt dis sik?

Di men rizin fɔ dis na bikɔs in jɛnɛtiks nɔ de wok fayn. Imajin se dɛn rayt wan sɛt fɔ instrɔkshɔn fɔ ɛnitin we wi bɔdi de du, lɛk wan risɛp, na wi jin dɛn. Wi ɔl gɛt di jin we de mek pɔsin gɛt di sik we dɛn kɔl Huntington (HD jin). Bɔt insay sɔm famili dɛn, wan kɔpi we nɔ fayn ɛn we dɔn chenj fɔ dis jin, dɛn kin gɛt frɔm mama ɛn papa to pikin dɛn.

If yu mama ɔ papa gɛt di sik, yu gɛt 50% chans fɔ gɛt di jin we nɔ fayn ɛn gɛt di sik. Dat min se yu kin gɛt am ɔ yu nɔ kin gɛt am. I tan lɛk se yu de flip kɔyn.

I impɔtant fɔ no sɔm ɔda tin dɛn bɔt dis:

• Dis jin we nɔ fayn kin kɔmɔt frɔm man ɛn uman.
• If yu nɔ gɛt di jin we nɔ fayn, yu nɔ go ɛva gɛt di sik we dɛn kɔl Huntington, ɛn yu nɔ go pas di sik to yu pikin dɛn.
• Dis sik nɔ de skip jɛnɛreshɔn . Dat min se, no we nɔ de fɔ mek pikin gɛt am if di granpa bin gɛt am bɔt nɔto di papa.

If yu ɔ sɔmbɔdi na yu famili de tink bɔt fɔ tɛst yu jɛnɛtiks fɔ si if yu gɛt dis sik, i impɔtant fɔ mit wit pɔsin we de advays yu bɔt yu jɛnɛtiks bifo tɛm. Dɛn kin ɛp yu fɔ ɔndastand wetin di tɛst rizɔlt kin min ɛn ɛp yu fɔ rɛdi fɔ dɛn.

Wetin na di sayn dɛm fɔ dis sik?

Dɛn kin sheb di sayn dɛm fɔ di sik we dɛn kɔl Huntington to tri men grup dɛm: di we aw pɔsin kin ebul fɔ muv, di we aw i de wok, ɛn di chenj we i de chenj di we aw i de biev. Bɔrku pipul dɛm wae gɛt dis sik kin gɛt sɔm kayn sik na ɔl di tri eria dɛm. Dɛn sayn ya kin apin dipen pan di stej we di sik de.

Di sayn dɛm fɔ di sik we dɛn kɔl Huntington (JHD) pan yɔŋ pikin dɛm

If pikin ɔ yɔŋ pɔsin gɛt dis sik, i kin go bifo kwik kwik wan. Bɔrku difrɛn sayn dɛm de wae yu kin si:

• Stif ɛn at fɔ waka
• I nɔ kin izi fɔ mek yu pe atɛnshɔn to yu
• Wantɛm wantɛm we i nɔ de na skul wok
• Di we aw pɔsin kin shek shek
• Di sik dɛn we kin mek pɔsin sik

Aw fɔ no di sik?

Di kwik we dɛn no se yu gɛt di sik, na di mɔ yu go ebul fɔ liv yu layf fɔ lɔng tɛm. If yu gɛt sɔm sayn dɛn, yu dɔktɔ go aks yu bɔt yu famili mɛdikal istri ɛn du yu bɔdi ɛgzam. Apat frɔm dat, dɛn go du sɔm tɛst dɛn we gɛt fɔ du wit di nervɔs sistɛm.

• Riflɛks dɛn
• Di trɛnk we di mɔsul dɛn gɛt
• Bɔdi balans
• Fɔ si ɛn yɛri
• Memori ɛn ebul fɔ tink

Di tin we pas ɔl na dat, di bɛst we fɔ kɔnfirm di sik fɔ tru na fɔ du tɛst fɔ no if pɔsin gɛt di sik . Dis kin tɛl yu fɔ tru if yu gɛt di bad bad HD jin na yu bɔdi ɔ nɔ gɛt am.

Aw dɛn kin trit am ɛn manej am?

Pan ɔl we no mɛrɛsin nɔ de fɔ dis sik, bɔku tritmɛnt dɛn de we go ɛp fɔ kɔntrol di sik ɛn mek layf izi. Wan wɔd de bitwin dɔktɔ dɛn we se, "Wi nɔ kin ad ia to yu layf, bɔt wi kin ad layf to yu ia." Na tru. Di tin we impɔtant pas ɔl na fɔ mek spɛshal pipul dɛn we kɔmɔt na difrɛn say dɛn wok togɛda fɔ trit yu.

Di mɛrɛsin dɛn we dɛn kin yuz

Di dɔktɔ kin gi yu difrɛn mɛrɛsin dɛn fɔ kɔntrol di sik dɛn we de sho se i gɛt sik.

• fכ kכntrכl muvmεnt: dεn de yuz wan klas כf drog dεm we dεn kכl `VMAT2 inhibitors` (e.g. Deutetrabenazine, Tetrabenazine) fכ ridyus muvmεnt dεm we dεn nכ kכntrol lεk `Chorea`.
• Fɔ prɔblɛm dɛn we gɛt fɔ du wit dɛn maynd:Dɛn kin gi yu mɛrɛsin fɔ mɛn pwɛl hat ɛn tin wae de mek yu fil fayn fɔ trit tin dɛm lɛk pwɛl hat ɛn wɔri.

Tɛrapi we dɛn kin gi

Dɛn tin ya na impɔtant tin fɔ mɛn di sik.

• Fizik tritmɛnt: I de ɛp fɔ ridyus di fɔdɔm bay we i de mek yu ebul fɔ waka ɛn balans fayn fayn wan.
• Ɔkupeshɔn tɛrapi: I de tich di tɛknik ɛn di tin dɛn we pɔsin nid fɔ kɔntinyu fɔ du ɛvride (drɛs, it).
• Spich therapy: I de ɛp fɔ mek yu nɔ ebul fɔ tɔk ɛn fɔ swɛla.

Di chenj we pɔsin de it ɛn di we aw i de liv in layf

Di wan dɛn we gɛt Huntington kin lɔs dɛn wet. dis na biכs di bכdi de bכn mכr kalori bikoz fכ nכmal muvmεnt εn i at fכ sכlow it. So, i rili impɔtant fɔ it tin dɛn we gɛt bɔku kalori, we gɛt fayn fayn tin dɛn fɔ it, ɛn we pɔsin kin ebul fɔ digest izi wan, lɛk aw pɔsin we sabi bɔt it dɔn advays .

Apat frɔm dat, fɔ du ɛksɛsayz, fɔ it tin dɛn we de na di Mɛditarenian, fɔ avɔyd fɔ drink rɔm, fɔ slip fayn, ɛn fɔ ridyus strɛs kin ɛp bak fɔ kɔntrol di sik.