Ɛnibɔdi na yu famili ɔ pɔsin we yu sabi dɔn bigin fɔ biev strenj wan wantɛm? Sɔntɛm dɛn an ɛn fut dɛn de shek shek we dɛn nɔ ebul fɔ kɔntrol? Ɔ yu tink se dɛn de mɛmba smɔl smɔl, ɛn i tan lɛk se dɛn nɔ gɛt bɛtɛ trɛnk igen? Na nɔmal tin fɔ mek wi fil fred we wi si tin dɛn lɛk dis. Tide wi go tɔk bɔt wan kɔndishɔn wae kin kam wit dɛn kayn sik ya, bɔt nɔr kin tɔk bɔt am bɔrku na sosayti. Dat na di sik we dɛn kɔl Huntington . Nɔ fred we yu yɛri dis nem. Lɛ wi tɔk bɔt ɔltin simpul wan ɛn klia wan.
Okay, so wetin na Huntington’s Disease?
Fɔ tɔk am simpul wan, di sik we dɛn kɔl Huntington na sik we pɔsin kin gɛt we i de mek di nerve cells na wi bren de day smɔl smɔl as tɛm de go, ɛn i kin pas frɔm wan jɛnɛreshɔn to ɔda jɛnɛreshɔn . I kin afɛkt mɔ di pat dɛn na di bren we de kɔntrol di we aw wi de muv, di we aw wi de tink, ɛn aw wi de biev.
Dis kin mek di mכtalman skil dεm dכn dכn, di we aw i de tink εn fכ disayd as tεm de go, εn i kin mek yu gεt mental hεlth prכblεm lεk diprεshכn εn wɔri.
Bɔrku tɛm, di sayn dɛm kin bigin fɔ sho bitwin di ej dɛm fɔ 30 ɛn 40. Bɔt sɔmtɛm, dis sik kin bigin wae yu smɔl ɔr yu yɔŋ, bifo yu rich 20. If na so i bi, wi kin kɔl am Juvenile Huntington ’s Disease (JHD) .
Naw, no mɛrɛsin nɔ de fɔ mɛn di sik we dɛn kɔl Huntington. Bɔt nɔ wɔri. Bɔrku tritmɛnt de wae fayn fɔ ɛp fɔ kɔntrol de sik ɛn fɔ ridyus de diskɔmfɔt wae dɛn kin kɔz. Ɛn bɔku tin dɛn de we yu kin du fɔ liv bɛtɛ layf wit dis sik.
Wetin mek dis sik kin apin? Aw dɛn kin gɛt am frɔm dɛn gret gret granpa dɛn?
Dis kin apin bikɔs wan pan wi jin dɛn nɔ fayn. Insay 1993, sayɛnsman dɛn bin kam fɔ no di jin we de mek dis sik. Dis jin de insay wi ɔl. Bɔt sɔm famili dɛn kin gɛt wan kɔpi we dɛn dɔn chenj fɔ dis jin. Dat jin we dɔn chenj kin kɔmɔt frɔm mama ɛn papa to pikin dɛn.
Imajin se yu mama ɔ yu papa gɛt di sik we dɛn kɔl Huntington. If na so, yu gɛt 50% chans fɔ gɛt di muteshon we de mek yu gɛt di sik. I tan lɛk se yu de flip kɔyn. Yu kin gɛt am ɔ yu nɔ kin gɛt am.
- Dis mutant jin kin kɔmɔt frɔm am ilɛksɛf na man ɔ uman.
- If yu nɔ gɛt di mutated gene, 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 if di papa gɛt am, di pikin nɔ go ebul fɔ divɛlɔp am if di papa nɔ de.
Dis jin de dominant ɔ recessive?
I rili simpul. Imajin se yu gɛt tu jin, wan na yu mama ɛn wan na yu papa. Wan ‘dominant’ jin tan lɛk di pikin we smat pas ɔlman na klas. If i de de, in pawa de insay ple. Di mutant jin we de mek pɔsin gɛt di sik we dɛn kɔl Huntington na in bak na wan we de bifo . So ivin if yu gɛt di mutant jin frɔm jɔs wan mama ɔ papa, i go du fɔ mek yu gɛt di sik.
If yu ɔ sɔmbɔdi na yu famili de tink bɔt fɔ tɛst yu jɛnɛtiks, i impɔtant fɔ mek yu fɔs aks fɔ advays bɔt yu jɛnɛtiks. Dɛn kin ɛksplen to yu wetin fɔ ɛkspɛkt frɔm di tɛst rizɔlt.
Wetin na di sayn dɛm fɔ di sik we dɛn kɔl Huntington?
Dɛn kin sheb di sayn dɛm fɔ di sik we dɛn kɔl Huntington to tri men pat dɛm: di we aw pɔsin kin ebul fɔ muv, di we aw i de wok, ɛn aw i de biev . Dɛn sayn ya nɔ kin apin wan tɛm, bɔt dɛn kin kam smɔl smɔl fɔ sɔm stej dɛm.
| Tayp fɔ di simptom | Di Simptom dɛn we kin apin to di fɔs tɛm | Midul-Stej Karakta dɛn |
|---|---|---|
| Moto | Di jεk muvmεnt dεm we yu nכ de kכntrol na di fes, an, εn leg dεm (chorea) . Diskɔmfɔt, fɔ lɛf fɔ balans. Di slo we di yay de muv. | (chorea) di kɔndishɔn we de wɔs. I nɔ izi fɔ waka. Fɔ drɔp tin dɛn, fɔ drɛg ɔltɛm. I nɔ izi fɔ tɔk ɛn swɛla. |
| Abiliti fɔ tink (Kɔgnitiv) . | I nɔ izi fɔ du bɔku wok. Fɔgɛt tin dɛn (e.g. apɔntinmɛnt). I nɔ izi fɔ lan nyu tin dɛn. I nɔ izi fɔ disayd fɔ du sɔntin. | Mɔ kɔnfyushɔn. Mɔ mɛmori lɔs. I klia se i dɔn ridyus di ebul fɔ tink. Nɔ ebul fɔ ɔganayz tin dɛn. |
| Bihayvya ɛn Saykolojik | Pwɛl hat, wɔri. Fɔ tink ɔ tɔk di sem tin bak ɛn bak. Fɔ vɛks izi wan. Nɔr kin slip ɛn nɔr kin gɛt trɛnk na yu bɔdi. | Big big chenj dɛn we kin apin to pɔsin we i bi. Tin dɛn we pɔsin kin tink bɔt day ɔ kil insɛf. We yu de lɔs yu wet. Kכndyushכn dεm lεk (OCD) כ (Bipolar disorder) de kכmכt . |
Di Simptom dɛn we kin kam let
Na dis stej, di sikman nid ɛp frɔm ɔda pipul dɛn fɔ du di wok dɛn. Fɔ waka ɛn tɔk kin stɔp kpatakpata. Bɔt ivin na dis stej, bɔku tɛm di pɔsin we sik kin ebul fɔ no di wan dɛn we dɛn lɛk.
Aw fɔ no bɔt dis sik?
If yu gɛt sɔm sayn dɛm, yu dɔktɔ go aks yu bɔt yu famili mɛdikal histri ɛn du yu bɔdi ɛgzam. Dɔn i go mɔs bi se dɛn go ɔda sɔm nyurolɔjik tɛst dɛn ɛn wan jenɛtik tɛst. Nyurolɔjik tɛst dɛn kin luk fɔ:
- Riflɛks dɛn
- Di trɛnk we di mɔsul dɛn gɛt
- Tink di rayt we
- Vishɔn ɛn Yɛri
- Di we aw pɔsin de fil ɛn di we aw i de tink
- Memori ɛn rizin
Di kwik we dɛn no di sik, na di mɔ i kin izi fɔ mek dɛn kɔntinyu fɔ gɛt gud kwaliti layf fɔ lɔng tɛm. Yu kin gɛt di chans bak fɔ tek pat pan nyu risach ɛn klinik trial dɛm.
Di we aw dɛn de trit am ɛn aw fɔ mɛn am
Pan ɔl we dɛn nɔr dɔn gɛt kɔmplit mɛrɛsin fɔ dis yet, bɔrku tritmɛnt de wae kin kɔntrol de sik ɛn mek layf izi. Nɔto fɔ natin we dɔktɔ dɛn se, "Wi nɔ go ebul fɔ ad ia to yu layf, bɔt wi kin ad layf to yu ia."
Di tin we impɔtant pas ɔl na fɔ aks fɔ ɛp frɔm wan tim we gɛt spɛshal pipul dɛn we kɔmɔt na difrɛn say dɛn. Dis tim kin gɛt nyurolɔjis, fizik thɛrapist, ɔkupeshɔn thɛrapist, tɔk thɛrapist, saykayatrist, ɛn nyutrishɔnist.
Di mɛrɛsin dɛn we dɛn kin yuz
- Fɔ kɔntrol di muvmɛnt:dכg dεm frכm di VMAT2 inhibito klas (e.g. Deutetrabenazine, Tetrabenazine) dεn de yuz fכ ridyus di muvmεnt dεm we dεn nכ kכntrol (chorea).
- Fɔ mental wɛl bɔdi prɔblɛm: Dɛn kin gi difrɛn mɛrɛsin wae de mek pɔrsin nɔr gɛt pwɛl hat ɛn wae pɔrsin nɔr de fil fayn fɔ kɔntrol pwɛl hat, wɔri, ɛn ɔda tin dɛm wae de mek pɔrsin fil bad.
Tɛrapi we dɛn kin gi
- Fizik Tɛrapi: I de ɛp fɔ ridyus fɔdɔm bay we i de mek yu ebul fɔ waka, balans, ɛn yu bɔdi trɛnk.
- Occupational Therapy: I de tich di teknik ɛn ikwipmɛnt fɔ mek di wok dɛn we pɔsin kin du ɛvride lɛk fɔ it ɛn drɛs izi.
- Spich Therapy: I de ɛp fɔ mek yu nɔ ebul fɔ tɔk ɛn fɔ swɛla.
Chenj dɛn na layf ɛn it
Pipul wae gɛt dis sik kin lɔs dɛn bɔdi bikɔs dɛn bɔdi kin bɔn bɔrku kalori ɛn i nɔ kin izi fɔ swɛla. So, i impɔtant fɔ it tin dɛn we gɛt bɔku tin fɔ it ɛn we gɛt bɔku kalori . Famili mɛmba dɛn kin ɛp fɔ du dis bay we dɛn:
- Nɔ ambɔg tin dɛn we nɔ impɔtant we yu de it.
- Pik it dɛn we izi fɔ it ɛn swɛla.
- Yuz spɛshal tin dɛn fɔ kɔt ɛn kɔp dɛn we gɛt straw.
- Fɔ ɛksesaiz ɔltɛm bak rili impɔtant. Bɔt yu nid fɔ tek tɛm bɔt sef. Tɔk to pɔsin we gɛt ɛkspiriɛns fɔ mɛn yu bɔdi ɛn mek wan plan fɔ du ɛksɛsayz we go fayn fɔ yu.
Kwɛstyɔn dɛn we yu fɔ aks yu dɔktɔ
If yu ɔ yu fambul de wɔri bɔt dis sik, yu kin aks dɛn kwɛstyɔn ya we yu de tɔk to yu dɔktɔ:
- Dɔktɔ, aw dis sik go afɛkt mi layf?
- Wetin na di bɛst tritmɛnt fɔ mi sik dɛn?
- Dis tritmɛnt kin agens ɔda mɛrɛsin dɛn we a de tek?
- Yu tink se i sef fɔ mek a kɔntinyu fɔ drayv?
- Aw a want fɔ tɔk to mi famili bɔt dis?
Mɛsej we dɛn kin kɛr go na os
- Huntington’s disease na wan sik wae de kam wit jεnεtiks wae de pas frכm jεnereshכn to jεnereshכn. If mama ɔ papa gɛt dis sik, 50% chans de fɔ mek pikin gɛt am.
- Pan ɔl we naw nɔr gɛt kɔmplit mɛrɛsin fɔ dis, tritmɛnt dɛn de we rili fayn fɔ kɔntrol di sayn dɛm ɛn fɔ mek yu layf bɛtɛ.
- I impɔtant fɔ no di sik kwik kwik wan, bikɔs dɛn kin ebul fɔ kɔntrol di sik dɛn fayn fayn wan.
- I impɔtant fɔ bil wan strɔng sɔpɔt sistɛm we gɛt spɛshal dɔktɔ dɛn, tritmɛnt pipul dɛn, ɛn famili mɛmba dɛn.
- Prɔblɛm wae de pan pɔrsin in maynd lɛk pwɛl hat ɛn wɔri kin kam wit dis sik, ɛn fɔ trit dɛm na impɔtant tin lɛk aw fɔ trit de sik wae de kam pan pɔrsin in bɔdi.
- Dɛn de du nyu risach ɔltɛm bɔt dis tɔpik, so kɔntinyu fɔ gɛt op. Stay in kɔntakt wit yu dɔktɔ.
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