Yu dɔn ɛva notis se sɔmbɔdi na yu famili, sɔntɛm yu mama ɔ yu papa, ɔ pɔsin we yu sabi, nɔ ebul fɔ kɔntrol in an ɛn fut dɛn wantɛm wantɛm? Yu kin dɔn notis tin dɛn lɛk smɔl smɔl shek we yu de shek, sɔntɛnde yu jɔs de stɔp, tin dɛn we de fɔdɔm na grɔn, ɔ i nɔ kin izi fɔ yu fɔ kɔntrol yu filin lɛk fɔ vɛks ɛn pwɛl at. Pan ɔl we dɛn tin ya kin tan lɛk smɔl tin na do, sɔntɛnde di rizin we mek dɛn de du dɛn tin ya kin rili siriɔs. Tide wi go tɔk bɔt wan sik we kin mek pɔsin gɛt di sem kayn sik, bɔt we bɔku pipul dɛn na wi kɔntri nɔ yɛri bɔt. Dat na di sik we dɛn kɔl Huntington.
Fɔ tɔk am simpul wan, wetin na di sik we dɛn kɔl Huntington’s Disease?
Di sik we dɛn kɔl Huntington na wan sik we de ambɔg di bren, mɔ di nerve cells. I kin afɛkt di pat dɛn na di bren we de kɔntrol di muvmɛnt ɛn mɛmori.
Tink bɔt wi bɔdi lɛk kɔmpyuta. Di bren na in men kɔntrol sɛnta. We dis sik bigin, sɔm pan di program dɛn we de na da kɔntrol sɛnta de kin go bifo. Dɔn tin dɛn lɛk aw yu bɔdi de muv, aw yu de fil, ɛn aw yu de tink kin bigin fɔ go bifo. As tɛm de go, dɛn sik ya kin bɔku smɔl smɔl, nɔto fɔ stɔp.
Ɛni kayn we de fɔ dis sik?
Yɛs, tu men kayn sik de we dɛn kɔl Huntington.
1. Adult onset: Dis na di kayn we we pipul dɛn kin gɛt mɔ. Bɔrku tɛm, di sayn dɛm kin bigin fɔ sho afta i dɔn ol 30 ia.
2. Juvenile Huntington’s disease: Dis na wan kayn sik we nɔ kin bɔku. I kin afɛkt pikin dɛn ɛn yɔŋ pipul dɛn.
Wetin na di sayn dɛm fɔ di sik we dɛn kɔl Huntington?
Dis sik kin afɛkt wi bɔdi ɛn bak wi maynd. So, dɛn kin sheb di sayn dɛm to tu men kategori. Lɛ wi luk dɛn dis we fɔ mek i izi fɔ ɔndastand dɛn.
| Tayp fɔ di simptom | Ɛksplen ɛn ɛgzampul dɛn |
|---|---|
| Di Simptom dɛn na di bɔdi |
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| Mental & Bihayvya Chenj |
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Na di fɔs tɛm, dɛn nɔ kin notis dɛn sayn ya. Dɛn kin bigin wit sɔntin we simpul lɛk fɔ ol pen ɔ fɔ stɔp. Bɔt as tɛm de go, dɛn sik ya kin wɔs smɔl smɔl, ɛn dis kin mek yu nɔ ebul fɔ du di wok dɛn we yu de du ɛvride fɔ yusɛf.
De impɔtant tin na dat, dɛn sayn ya kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. Wetin wan pɔsin gɛt nɔ kin rili tan lɛk ɔda pɔsin.
Wetin mek dis sik kin apin? Wetin na di kɔz?
Di men tin we kin mek pɔsin gɛt di sik we dɛn kɔl Huntington na di chenj we pɔsin kin chenj in jɛnɛtiks. fכ simpul wan, i de kכz fכ wan chenj na di jin we dεn kכl `HTT` na wi bכdi.
dis `HTT` jin de mek wan protin we dεn kכl `huntingtin`. dis protin de εp di nεv sεl dεm (nyuron dεm) na wi bren fכ wok fayn fayn wan.
כltu, biכs pכsin we gεt Huntington in sik gεt difεkt na di `HTT` jin, di `huntingtin` protin we i de prodyuz de fכlt bak. Bifo dat protin we nɔ fayn fɔ ɛp di nɛv sɛl dɛn, i kin bigin fɔ pwɛl dɛn. We di bren sɛl dɛn day dis kayn we, di sayn dɛn we wi bin dɔn tɔk bɔt kin apin.
Dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa?
Yɛs. Dis na sik we pɔsin kin gɛt frɔm in mama ɛn papa. insay mεdisin, wi kin kכl dis ``autosomal dominant`` patεn fכ inhεrit. Dis jɔs min se:
If yu mama ɔr papa gɛt dis sik, yu gɛt 50% chans fɔ gɛt am bak.Yɛs. Ɛn na di sem tin kin apin to yu brɔda ɛn sista dɛn.
Na smɔl tɛm nɔmɔ, pɔsin kin gɛt di sik we nɔr gɛt ɛnibɔdi na dɛn famili we gɛt di sik bikɔs ɔf nyu jɛnɛtik muteshon. Bɔt dat nɔ kin apin so ɔltɛm.
Aw dɔktɔ kin no bɔt dis sik?
If yu gɛt dɛn sik ya, di fɔs tin we yu fɔ du na fɔ go to dɔktɔ. I go mɔs bi se i go sɛn yu to dɔktɔ we de mɛn yu nyuro.
Dɛn kin du bɔku tɛst fɔ no if pɔsin gɛt di sik.
- Fɔ chɛk yu bɔdi ɛn yu nyurolɔjik: Di dɔktɔ go tek tɛm chɛk aw yu bɔdi de muv, aw yu de balans, ɛn aw yu de tink.
- Famili mɛdikal histri: Dɛn go aks yu if ɛnibɔdi na yu famili dɔn gɛt dis sik. Dis rili impɔtant.
- Jɛnɛtik tɛst: Dis na di tɛst we impɔtant pas ɔl fɔ kɔnfirm di sik. Dis min se yu fɔ tek wan sɛmpul pan yu blɔd ɛn tɛst in DNA fɔ si if di HTT jin nɔ fayn.
- Bren skan: Dɛn kin du skan lɛk magnɛtik rɛsɔnans imej (MRI) ɛn kɔmpyuta tomografi (CT) skan bak fɔ si if ɛni chenj de na di bren.
I pɔsibul fɔ no if yu gɛt dis bifo yu si di sik?
Yɛs, yu kin ebul. If sɔmbɔdi na yu famili (mama, papa, brɔda ɛn sista) gɛt dis sik, dɛn kin du di jenɛtik tɛst fɔ no if yusɛf gɛt di jin bifo di sik sho . dis dεn kכl am ``prεdiktiv jεnεtik tεst''.
Bɔt dis na disizhɔn we rili impɔtant.
- Di bɛnifit dɛn: We yu no se yu go gɛt dis sik tumara bambay, dat kin ɛp yu fɔ plan fɔ famili ɛn fɔ plan fɔ gɛt mɔni.
- Di bad tin dɛn: Dɔn bak, i kin rili at na yu maynd fɔ no se yu gɛt sik we yu nɔ go ebul fɔ mɛn.
So bifo yu du dis kayn tɛst, i bɛtɛ fɔ tɔk to pɔsin we de advays yu bɔt yu jɛnɛtiks ɛn disayd fɔ du sɔntin afta yu dɔn ɔndastand gud gud wan di gud ɛn bad tin dɛn.
Yu tink se tritmɛnt de fɔ dis?
Dis na di tin we rili sɔri fɔ yɛri. Naw, no tritmɛnt nɔr de fɔ mɛn di sik we dɛn kɔl Huntington kpatakpata, fɔ stɔp di sik fɔ kam, ɔr fɔ stɔp di sayn dɛm fɔ wɔs.
Bɔt, nɔ wɔri. Bɔrku tritmɛnt de wae kin ɛp fɔ kɔntrol de sik ɛn ɛp de pɔrsin fɔ liv fayn fayn wan.
- Fizik tritmɛnt ɔr ɔkupeshɔn tɛrapi: Dɛn tritmɛnt ya kin ɛp fɔ mek di bɔdi balans fayn, di mɔsul dɛn trɛnk, ɛn mek i izi fɔ du wok ɛvride.
- Tɛrapi fɔ tɔk:I de ɛp fɔ mek i nɔ ebul fɔ tɔk ɛn fɔ swɛla.
- Kɔnsul: Kɔnsul na impɔtant tin fɔ bia wit tin dɛm lɛk strɛs ɛn pwɛl hat wae de sik kin kam wit.
- Mɛrɛsin: Yu dɔktɔ kin gi yu difrɛn mɛrɛsin fɔ kɔntrol yu sik dɛn. Fɔ ɛgzampul:
- Dɛn kin yuz mɛrɛsin lɛk ``Tetrabenazine'' ɛn ``Deutetrabenazine'' fɔ kɔntrol di bɔdi we de shek (chorea).
- Mɛrɛsin dɛm lɛk antidipreshan ɛn antisaykotik mɛrɛsin fɔ pwɛl hat ɛn maynd prɔblɛm.
Aw di sik kin wɔs as tɛm de go?
Huntington’s disease na wan sik wae de go bifo pasmak wae kin go bifo tru tri stej.
| Stej we di sik de | Pozishɔn |
|---|---|
| Di Fɔs Stej | De sayn dɛm nɔr kin so bad. Sɔntɛm, yu kin shek smɔl, yu maynd kin chenj, ɛn yu kin kɔnfyus. Yu kin du di tin dɛn we yu kin du ɛvride lɛk aw yu kin du am. |
| Midul Stej | Di chenj dɛn we kin apin na di bɔdi ɛn maynd kin bɔku. Tin dɛn lɛk fɔ drayv ɛn fɔ wok kin tranga. I nɔ kin izi fɔ swɛla kin bɔku. Fɔdɔm ɔltɛm. Bɔt yu kin du yu yon wok dɛn (fɔ was, drɛs) fɔ yusɛf. |
| Ɛnd Stej | I kin bi se i nɔ pɔsibul fɔ du di wok dɛn we pɔsin kin du ɛvride in wangren. Bɔku pipul dɛn kin de na bed. Dɛn nid ɛp frɔm ɔda pɔsin fɔ ɔltin, frɔm it to was. Dɛn nid fɔ kia fɔ dɛn 24 awa. |
Dis sik de kil pɔsin?
Di sik we dɛn kɔl Huntington nɔ kin mek pɔsin day dairekt wan. Bɔt, prɔblɛm dɛn we di sik kin gɛt kin mek pɔsin day. Fɔ ɛgzampul:
- If i nɔ izi fɔ swɛla, i kin mek it/drink stɔp na di say we yu de blo , we kin mek yu gɛt infɛkshɔn lɛk nyumonia .
- Siriɔs injuri dɛn we pɔsin kin gɛt we i kin fɔdɔm bɔku tɛm .
Bɔrku tɛm, dis sik kin te bitwin 10 ɛn 30 ia afta dɛn dɔn no bɔt dis sik.Yu kin liv. Dis tɛm kin difrɛn frɔm wan pɔsin to ɔda pɔsin.
Wetin yu kin du wae yu de liv wit de sik?
Pan ɔl we dɛn nɔ go ebul fɔ avɔyd dis sik, bɔku tin dɛn de we dɛn kin du fɔ mek dɛn kɔntinyu fɔ gɛt gud kwaliti layf we dɛn de liv wit di sik.
- Ɛksesaiz ɔltɛm: Risach dɔn sho se ɛksesaiz kin ɛp yu fɔ gɛt wɛlbɔdi na yu bɔdi ɛn yu maynd.
- Gɛt gud it: Fɔ bil bɔdi kin bɔn 5,000 kalori ɛvride. So, i impɔtant fɔ go to pɔsin we sabi bɔt it ɛn it gud it.
- Drink bɔku wata: If i nɔ izi fɔ swɛla, dat kin mek yu nɔ gɛt wata na yu bɔdi. So, i impɔtant fɔ drink di wata we yu nid ɔl di de.
- Join wan sɔpɔt grup: Fɔ tɔk to ɔda pipul dɛm wae gɛt dis sik ɛn dɛn famili na big tin fɔ mek yu maynd gɛt trɛnk.
- Plan fɔ tumara bambay: Risach bifo tɛm bɔt di kia we yu go nid (hom kia savis, nɔs os) if yu sik de wɔs. Pik pɔsin we yu abop pan fɔ kia fɔ yu mɔni ɛn lɔ biznɛs.
Na nɔmal tin fɔ fil bad ɛn shɔk we yu kam fɔ no bɔt dis sik. Bɔt nɔto yu wan de. Dɔktɔ, tritmɛnt pipul dɛn, advaysa dɛn, ɛn yu famili de fɔ ɛp yu.
Mɛsej we dɛn kin kɛr go na os
- Huntington’s disease na wan sik wae de kam wit jεnεtiks wae de pas to gεt jεnereshכn. I nɔto sik we pɔsin kin pas.
- Dis kin mɔs pwɛl di nɛv sɛl dɛn na di bren, ɛn dis kin afɛkt di we aw di bɔdi de muv, di we aw i de fil, ɛn di we aw i de tink.
- Nɔr mɛrɛsin nɔr de fɔ dis sik, bɔt tritmɛnt de wae kin ɛp fɔ kɔntrol de sik ɛn fɔ mek yu liv bɛtɛ layf.
- If pɔsin na yu famili gɛt dis sik, yusɛf de pan denja. If yu gɛt ɛni dawt bɔt am, tɔk to dɔktɔ ɛn gɛt advays bɔt aw fɔ tɛst yu jɛnɛtiks.
- Pan ɔl we i nɔ kin izi fɔ liv wit dis sik, if yu gɛt di rayt mɛrɛsin, dɛn sɔpɔt yu fɔ mɛn yu, ɛn yu famili ɛp yu, yu go ebul fɔ liv fayn fayn wan.
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