Ingabe ukhona emndenini wakho noma othile omaziyo oqale ukwenza ngendlela exakile? Mhlawumbe izitho zakhe zomzimba ziyanyakaza ngokungalawuleki? Noma ingabe inkumbulo yakhe iyaphela kancane kancane, futhi kubonakala sengathi ulahlekelwa amandla akhe angaphambili? Kuvamile ukuzizwa wesaba lapho sibona izinto ezinjengalezi. Namuhla sizokhuluma ngesimo esingabangela lezi zimpawu, kodwa esingakhulunywa ngaso kakhulu emphakathini. Leso yisifo sikaHuntington . Ungakhathazeki uma uzwa leli gama. Ake sixoxe ngakho konke kalula nangokucacile.
Kulungile, pho siyini isifo sikaHuntington?
Kalula nje, isifo sikaHuntington siyisifo sofuzo esibangela ukuba amangqamuzana ezinzwa ebuchosheni bethu afe kancane kancane ngokuhamba kwesikhathi, futhi sidluliselwa ezizukulwaneni ngezizukulwane . Sithinta kakhulu izingxenye zobuchopho ezilawula ukunyakaza kwethu, ukucabanga, kanye nokuziphatha.
Lokhu kuholela ekunciphiseni amakhono okunyakaza, ukucabanga kanye nokwenza izinqumo ngokuhamba kwesikhathi, kanye nengozi eyengeziwe yokuba nezinkinga zempilo yengqondo njengokucindezeleka nokukhathazeka.
Ngokuvamile, lezi zimpawu ziqala ukuvela phakathi kweminyaka engama-30 nengama-40. Kodwa-ke, ngezinye izikhathi lesi sifo singaqala ebuntwaneni noma ebudaleni, okungukuthi, ngaphambi kweminyaka engama-20. Kuleso simo, sibiza ngokuthi yi -Juvenile Huntington 's Disease (JHD) .
Okwamanje akukho ukwelashwa kwesifo sikaHuntington. Kodwa ungakhathazeki. Kunezindlela eziningi zokwelapha ezisebenzayo zokusiza ukuphatha izimpawu nokunciphisa ukungakhululeki ezikubangelayo. Futhi kunezinto eziningi ongazenza ukuze uphile impilo engcono ngalesi simo.
Kungani lesi sifo sivela? Sizuzwa kanjani njengefa?
Lokhu kubangelwa yiphutha kwelinye lamajini ethu. Ngo-1993, ososayensi bathola ijini elibangela lokhu. Lejini ikhona kithi sonke. Kodwa-ke, eminye imindeni ingaba nekhophi eguquliwe yalejini. Leyojini eguquliwe idluliselwa kusuka kubazali iye ezinganeni.
Cabanga ukuthi umama wakho noma ubaba wakho banesifo sikaHuntington. Uma kunjalo, unethuba elingu-50% lokuthola ifa lokuguquka okubangela lesi sifo. Kufana nokuphonsa uhlamvu lwemali. Ungase uluthole noma ungalutholi.
- Lesi sakhi sofuzo esiguquliwe singazuzwa njengefa kungakhathaliseki ubulili.
- Uma ungenalo i-gene eguquliwe, awusoze waba nesifo sikaHuntington. Futhi ngeke udlulisele lesi sifo ezinganeni zakho.
- Lesi sifo asidluli izizukulwane . Okusho ukuthi, uma ubaba enaso, indodana ayikwazi ukusithola ngaphandle kukababa.
Ingabe lesi sakhi sofuzo sinamandla noma sinamandla kakhulu?
Kulula kakhulu. Cabanga ukuthi unezakhi zofuzo ezimbili, esisodwa esivela kumama wakho nesinye esivela kuyihlo. Izakhi zofuzo 'ezibusayo' zifana nengane ehlakaniphe kakhulu ekilasini. Uma ekhona, amandla akhe ayadlala. Izakhi zofuzo eziguqukayo ezibangela isifo sikaHuntington nazo zinamandla amakhulu . Ngakho-ke noma ngabe uthola izakhi zofuzo eziguqukayo kumzali oyedwa kuphela, kwanele ukubangela lesi sifo.
Uma wena noma othile emndenini wakho ecabanga ngokuhlolwa kwezakhi zofuzo, kubalulekile ukuthi uqale ngokufuna ukwelulekwa kwezakhi zofuzo. Bangakuchazela ukuthi yini ongayilindela emiphumeleni yokuhlolwa.
Ziyini izimpawu zesifo sikaHuntington?
Izimpawu zesifo sikaHuntington zingahlukaniswa ngezigaba ezintathu eziyinhloko: amakhono okunyakaza, ukusebenza kwengqondo, kanye nokuziphatha . Lezi zimpawu ngokuvamile aziveli zonke ngesikhathi esisodwa, kodwa zikhula kancane kancane ngezigaba eziningana.
| Uhlobo lwesibonakaliso | Izimpawu Zesigaba Sokuqala | Izici Zesigaba Esiphakathi |
|---|---|---|
| Injini | Ukunyakaza okungalawuleki kobuso, izingalo, nemilenze (chorea) . Ukungakhululeki, ukulahlekelwa yibhalansi. Ukunciphisa ukunyakaza kwamehlo. | (chorea) isimo esibi kakhulu. Ubunzima bokuhamba. Ukuwisa izinto, ukuhudula njalo. Ubunzima bokukhuluma nokugwinya. |
| Ikhono lokucabanga (Lokuqonda) | Ubunzima bokwenza imisebenzi eminingi ngesikhathi esisodwa. Ukukhohlwa izinto (isb. ama-aphoyintimenti). Ubunzima bokufunda izinto ezintsha. Ubunzima bokwenza izinqumo. | Ukudideka okwengeziwe. Ukulahlekelwa inkumbulo okwengeziwe. Ikhono lokucabanga elinciphile ngokusobala. Ukungakwazi ukuhlela izinto. |
| Ukuziphatha kanye Nezengqondo | Ukucindezeleka, ukukhathazeka. Ukucabanga noma ukusho into efanayo ngokuphindaphindiwe. Ukuthukuthela kalula. Ukungalali nokulahlekelwa amandla omzimba. | Izinguquko ezinkulu zobuntu. Imicabango yokufa noma ukuzibulala. Ukwehla kwesisindo. Ukuvela kwezimo ezifana (OCD) noma (Bipolar disorder) . |
Izimpawu Zesigaba Sokugcina
Kulesi sigaba, isiguli sidinga usizo lwabanye ukuze senze imisebenzi. Ukuhamba nokukhuluma kungase kume ngokuphelele. Kodwa-ke, ngisho nakulesi sigaba, isiguli sivame ukukwazi ukubona abathandekayo baso.
Ungasithola kanjani lesi sifo?
Uma unezimpawu, udokotela wakho uzobuza ngomlando wezokwelapha womndeni wakho bese enza ukuhlolwa ngokomzimba. Cishe bazoyala ukuhlolwa kwezinzwa kanye nokuhlolwa kofuzo. Ukuhlolwa kwezinzwa kubheka:
- Ukuzindla
- Amandla emisipha
- Ibhalansi
- Umbono Nokuzwa
- Isimo sengqondo nesimo sengqondo
- Inkumbulo kanye nekhono lokucabanga
Uma lesi sifo sisheshe sitholakale, kuba lula kakhulu ukugcina impilo yakho isezingeni elihle isikhathi eside. Ungase uthole nethuba lokubamba iqhaza ocwaningweni olusha kanye nokuhlolwa kwezokwelapha.
Izindlela zokwelapha kanye nokuphathwa kwazo
Nakuba kungekho ikhambi eliphelele lalokhu okwamanje, kunezindlela eziningi zokwelapha ezingalawula izimpawu futhi zenze impilo ibe lula. Akusikho ize ukuthi odokotela bathi, "Asikwazi ukwengeza iminyaka empilweni yakho, kodwa singangeza impilo eminyakeni yakho."
Into ebaluleke kakhulu ukufuna usizo lwethimba lochwepheshe abavela emikhakheni eyahlukene. Leli qembu lingafaka phakathi odokotela bezinzwa, abelaphi bomzimba, abelaphi bomsebenzi, abelaphi bokukhuluma, odokotela bezifo zengqondo kanye nochwepheshe bezokudla.
Imithi
- Ukulawula ukunyakaza:Imithi evela ekilasini le -VMAT2 inhibitor (isib. i-Deutetrabenazine, i-Tetrabenazine) isetshenziselwa ukunciphisa ukunyakaza okungalawuleki (i-chorea).
- Ngezinkinga zempilo yengqondo: Kunikezwa imithi ehlukahlukene yokucindezeleka kanye nemithi yokuqinisa imizwa ukuze kulawulwe ukucindezeleka, ukukhathazeka, kanye nokunye ukushintshashintsha kwemizwa.
Ukwelapha
- Ukwelashwa Komzimba: Kusiza ekunciphiseni ukuwa ngokuthuthukisa ukuhamba, ibhalansi, kanye namandla omzimba.
- Ukwelapha Emsebenzini: Kufundisa amasu nemishini yokwenza imisebenzi yansuku zonke efana nokudla nokugqoka kube lula.
- Ukwelashwa Ngenkulumo: Kusiza ngezinkinga zokukhuluma nokugwinya.
Izinguquko endleleni yokuphila kanye nokudla okunempilo
Abantu abanalesi sifo bangase banciphise isisindo ngoba imizimba yabo ishisa amakhalori amaningi futhi babe nobunzima bokugwinya. Ngakho-ke, kubalulekile ukudla ukudla okunomsoco, okunamakhalori amaningi . Amalungu omndeni angasiza ngalokhu ngokuthi:
- Gwema ukuphazamiseka okungadingekile ngesikhathi sokudla.
- Khetha ukudla okulula ukukuhlafuna nokukugwinya.
- Sebenzisa izitsha eziklanywe ngokukhethekile kanye nezinkomishi ezinezinti zotshani.
- Ukuzivocavoca njalo nakho kubaluleke kakhulu. Kodwa kudingeka uqaphele ngokuphepha. Khuluma nochwepheshe wezokwelapha ngokomzimba bese udala uhlelo lokuzivocavoca olufanelana nawe.
Imibuzo okufanele uyibuze udokotela wakho
Uma wena noma ilungu lomndeni likhathazekile ngalesi simo, ungabuza le mibuzo uma ukhuluma nodokotela wakho:
- Dokotela, lesi sifo sizoyithinta kanjani impilo yami?
- Yiziphi izindlela zokwelapha ezingcono kakhulu zezimpawu zami?
- Ingabe lokhu kwelashwa kungangqubuzana neminye imithi engiyithathayo?
- Ingabe kuphephile kimi ukuqhubeka nokushayela?
- Ngifuna ukukhuluma kanjani nomndeni wami ngalokhu?
Umlayezo Wokuya Nawe Ekhaya
- Isifo sikaHuntington siyisifo sofuzo esidluliselwa kusuka esizukulwaneni kuya kwesinye. Uma umzali enalesi sifo, kunethuba elingu-50% lokuthi ingane izosizuza njengefa.
- Nakuba okwamanje kungekho ikhambi eliphelele lalokhu, kunezindlela zokwelapha ezisebenza kahle kakhulu zokulawula izimpawu nokuthuthukisa ikhwalithi yokuphila.
- Ukutholwa kusenesikhathi kubalulekile, njengoba izimpawu zingalawulwa kangcono.
- Kubalulekile ukwakha uhlelo lokusekela oluqinile oluhlanganisa odokotela abangochwepheshe, abelaphi, kanye namalungu omndeni.
- Izinkinga zengqondo ezifana nokucindezeleka nokukhathazeka zivame ukwenzeka ngalesi sifo, futhi ukuzelapha kubaluleke njengokwelapha izimpawu zomzimba.
- Ucwaningo olusha luqhutshwa njalo ngalesi sihloko, ngakho-ke hlala unethemba. Hlala uxhumene nodokotela wakho.
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