I-JHD ihluke kanjani ku-Adult-Onset Isifo Se-Huntington?
Ngenkathi isifo sezingane sikaHuntington sifinyeleleka kanzima ukuthola, kungasiza ukufunda ukuthi ungalindela nokuthi ungabhekana kanjani nemiphumela yayo. Isifo se-Juvenile Huntington yisimo senhliziyo esenza izinkinga zengqondo, izinkinga zengqondo, nokunyakaza okungaqondakali komzimba. Igama elithi "izingane" libhekisela ebuntwaneni noma ekukhuleni; Isifo sikaHuntington sibhekwa njengabantwana uma siqala ngaphambi kokuba umuntu eneminyaka engu-20 ubudala.
Amanye amagama esifo sesishukela sezingane ezibandakanya i-JHD, i-juvenile iqala i-HD, isifo se-Huntington esasemncane, i-HD yabantwana, nesifo se-Huntington, ukuqala kwezingane,
Ukuvama
Ucwaningo lwacwaninganiselwa ukuthi amaphesenti angu-5 kuya ku-10 amaphesenti ayisifo sikaHuntington ahlukaniswa njengabantwana. Njengamanje, abangaba ngu-30 000 baseMelika bahlala nesifo sikaHuntington, cishe abangaba ngu-1 500 kuya ku-3 000 baneminyaka engaphansi kwengu-20.
Izimpawu
Izimpawu ze-JHD zivame ukuhluke kakhulu ekukhuleni komuntu omdala ukuqala kwesifo sikaHuntington. Ukufunda ngabo ngokuzwakalayo kunzima kakhulu. Yazi ukuthi akukhona konke okwenzekayo nokuthi izindlela zokwelapha ezihlukahlukene zitholakala ukusiza ukuphatha lezo ezenzelwe ukugcina izinga lokuphila.
Izinguquko ezinengqondo zingabandakanya ukwehla kwenkumbulo , ukucubungula okusheshayo, ubunzima besimanje ekusebenzeni kwesikole, nezinselele ekuqaliseni noma ekuqedeni umsebenzi ngempumelelo.
Izinguquko zokuziphatha zivame ukwakhiwa futhi zingase zihlanganise nentukuthelo, ukuhlukunyezwa ngokomzimba, ukungabi nesifiso, ukucindezeleka, ukukhathazeka, ukuphazamiseka okucindezelayo nokucindezela .
Izinguquko zomzimba zihlanganisa imilenze eqinile, ukuxubha, ukugwinya ubunzima, ukwehla kwenkulumo, nokuhamba ngezintambo. Ngenkathi izibalo zikaHuntington ziqala ukudala abantu abadala, zivame ukukhombisa ukunyakaza okungajwayelekile, okungaqondakali (okuthiwa i-chorea), labo abane-JHD banamathuba amaningi okubonisa izimpawu ezifana nesifo sikaParkinson, njengokunciphisa, ukuqina, ukulinganisela okungalungile nokuhlushwa.
Ukuzizwa kungase kwenzeke nakwamanye abantu abancane abanoJHD. Ukwengeza, izinguquko ekubhalweni ngesandla zingabonakala kusenesikhathi ku-JHD.
AmaJuni ne-HD Oku-odwe ngaphambilini
I-JHD inezinselelo ezihlukahlukene ezivela ku-HD-abadala. Zihlanganisa lokhu okulandelayo.
Izinkinga esikoleni
I-JHD ingabangela ubunzima ekufundeni nasekukhunjuleni ulwazi esikhalweni sesikole, ngisho nangaphambi kokuba i-JHD itholakale. Lokhu kungenza kube nzima ngabafundi nabazali abangase bangazi ukuthi kungani ukusebenza kwesikole kunqabile kakhulu.
Ngokomphakathi, isikole ne-JHD singabuye sibe inselele uma ukuziphatha kungalungile futhi ukuxhumana komphakathi kuyathinteka.
Ubuqotho Esikhundleni seChorea
Nakuba izimo eziningi ze-HD ezikhulile zibandakanya i-chorea (ukunyakaza okungazibandakanyi), i-JHD ivame ukuthinta izimpikiswano ngokuyenza ibe lukhuni futhi ingapheli. Ngakho, ukwelashwa kuvame ukuhluka ku-JHD.
Ukuzizwa
Izimpikiswano azivame ukuvela kuma-HD-abadala kodwa zikhula ngamaphesenti angama-25 kuya ku-30 amacala we-JHD. Lezi zinkinga zingafaka abantu engozini enkulu yokuwa nokulimala.
Imbangela ne-Genetics
Yazi ukuthi akukho muntu okwenzile noma ongazange enze ukuthi ingane ihlakulele i-JHD. Ngokuvamile kubangelwa ukuguquguquka kwezakhi zofuzo ezine ezine-chromosome ezizuzwe njengefa kubazali.
Esinye isici segesi, okuthiwa i-CAG (i-cytosine-adenine-guanine) iphinda, ibeka umuntu engozini ye-HD. Uma inani le-CAG liphinda lingaphezu kuka-40, lo muntu uzohlola okuhle ku-HD. Abantu abahlakulela i-JHD bavame ukuphindaphinda kuka-50 CAG ku-chromosome yabo.
Amaphesenti angaba ngu-90 ama-JHD amacala azuzwe njengefa, nakuba igesi lingadluliselwa kubo bobabili abazali.
Ukwelapha
Njengoba ezinye zezimpawu zihluke kwi-HD, i-JHD ivame ukuphathwa ngendlela ehlukile kune-HD. Izinketho zokwelashwa ngokuvamile zixhomeke ezimpawu ezikhona futhi zenzelwe ukusiza izinga lokuphila elihle.
Uma kutholakala izifo, imithi ye-anticonvulsant ingase ibekwe ukuba ilawule. Nakuba ezinye izingane zisabela kahle kule mithi, abanye babhekana nemiphumela emibi kakhulu yokulala, ukusebenzisana kahle, nokudideka. Abazali kufanele baxoxe ngezinzuzo eziyingozi zemithi enomdokotela wengane.
I-Psychotherapy inconywa kulabo abahlala ne-JHD, kunikezwe ukulungiswa okuphawulekayo okushiwo yi-JHD. Ukukhuluma nge-JHD nemiphumela yayo kungasiza kokubili izingane kanye namalungu omndeni ukuba babhekane nazo, bafunde ukuchazela abanye, banqume ukuthi yiziphi izidingo, futhi baxhumane nezinsizakalo ezisekela emphakathini.
Ukwelapha ngokomzimba kanye nokusebenza kuyaphakanyiswa futhi kungasetshenziswa ukusiza ukwelula nokuphumula izikhali nemilenze eqinile, kanye nokujwayela imishini ukuhlangabezana nezidingo.
I-dietitian ingasiza ngokusungula ukudla okuphezulu kwekhalori ukulwa nokulahlekelwa kwesisindo abantu abanoJHD abavame ukubhekana nabo.
Okokugcina, inkulumo nomlimi wezokwelapha zingasiza ngokukhomba izindlela zokuqhubeka nezidingo zokuxhumana nabantu abakuzungezile uma inkulumo iba nzima.
Isibikezelo
Ngemva kokuxilongwa nge-JHD, ukulindela impilo cishe iminyaka engu-15. I-JHD iyathuthuka, okusho ukuthi ngokuhamba kwesikhathi, izimpawu zanda nokusebenza ziyaqhubeka nokuhla.
Noma kunjalo, khumbula ukuthi kukhona usizo kubo bobabili nemindeni yabo njengoba behlangabezana ne-JHD. Uma ungaqiniseki ukuthi ungaqala kuphi, xhumana noHuntington's Disease Society of America ngolwazi nokusekelwa eduze kwakho.
> Imithombo:
> I-Huntington's Disease Society of America. I-Juvenile Onset HD. http://hdsa.org/living-with-hd/juvenile-onset-hd/
> I-Huntington's Disease Youth Organization. Okuyisisekelo se-JHD. https://en.hdyo.org/jhd/articles/52
> Liou, S. (2010) Umkhankaso wokuHlola weMfundo eHuttington eStford. Izifo zikaJuvenile Huntington.
> Izikhungo Zikazwelonke Zempilo. Isikhungo Sokwazisa Ngezifo Zamafuba. I-Juvenile Huntington Disease. https://rarediseases.info.nih.gov/diseases/10510/juvenile-huntington-disease