Asigcini nje ngokudla ifa lokubukeka kwethu namathalente ethu kubazali bethu, kodwa ngezinye izikhathi singadla nezifo. Isifo sikaHuntington siyisifo esibi esithinta amangqamuzana ezinzwa ebuchosheni futhi sidluliselwa ezizukulwaneni ngezizukulwane . Ungase uzizwe wesaba uma uzwa leli gama, kodwa kubaluleke kakhulu ukuliqaphela. Ngakho-ke namuhla, ake sixoxe ngalo ngendlela elula neqondakalayo.
Iyini ngempela i-Huntington's Disease?
Kalula nje, isifo sikaHuntington siyisifo sofuzo esidluliselwa esizukulwaneni ngesizukulwane. Sibangela ukuthi amangqamuzana ezinzwa ebuchosheni afe kancane kancane. Ngokuhamba kwesikhathi, lokhu kungaholela ekushintsheni kwamakhono ethu okunyakaza, ukuqonda, ngisho nemizwelo. Lokhu kungandisa ingozi yokuba nezinkinga zempilo yengqondo njengokucindezeleka nokukhathazeka.
Nakuba lesi sifo singaqala kunoma yimuphi ubudala, izimpawu zivame ukuvela phakathi kweminyaka engama-30 nengama-40. Kodwa-ke, uma lesi sifo siqala ebuntwaneni, noma ngaphambi kweminyaka engama-20, sibizwa ngokuthi isifo sikaHuntington sentsha (JHD).
Okwamanje akukho ukwelashwa kwalesi sifo. Kodwa-ke, kunezindlela eziningi zokwelapha ezingasiza ekulawuleni izimpawu futhi zenze impilo ibe lula. Ngakho ungalilahli ithemba.
Kuvamile ukuzizwa ukhungathekile uma ufunda ngesifo esinjengalesi. Kodwa-ke, ukuthola usizo kusonhlalakahle, umeluleki, noma iqembu lokusekela labantu abaphila nalesi sifo kungaba usizo olukhulu ekubhekaneni nalesi simo. Ngosizo lwethimba lochwepheshe bezokwelapha elihlanganisa imikhakha eminingi, ngisho nomuntu onesifo sikaHuntington angaphila ngokuzimela iminyaka eminingi.
Yini ebangela lesi sifo?
Isizathu esiyinhloko salokhu ukukhubazeka kwezakhi zofuzo. Cabanga ukuthi isethi yemiyalelo yomsebenzi ngamunye emzimbeni wethu, njengeresiphi, ibhalwe ezizakhi zofuzo zethu. Sonke sinezakhi zofuzo ezibangela isifo sikaHuntington (izakhi zofuzo ze-HD). Kodwa kweminye imindeni, ikhophi yalesi sakhi sofuzo enephutha, eguquliwe izuzwe njengefa kubazali ezinganeni.
Uma umama noma ubaba wakho enalesi sifo, unethuba elingu-50% lokuthola ifa lofuzo olunephutha nokuthuthukisa lesi sifo. Lokho kusho ukuthi ungase usithole noma ungasitholi. Kufana nokuphonsa uhlamvu lwemali.
Kubalulekile ukwazi ezinye izinto ezimbalwa ngalokhu:
- Lesi sakhi sofuzo esingasebenzi kahle singazuzwa njengefa ngamadoda nabesifazane.
- Uma ungalitholi ifa lofuzo olunephutha, awusoze waba nesifo sikaHuntington, futhi ngeke udlulisele lesi sifo ezinganeni zakho.
- Lesi sifo asidluli izizukulwane . Okusho ukuthi, ayikho indlela ingane engasithola ngayo uma umkhulu wayenaso kodwa hhayi uyise.
Uma wena noma othile emndenini wakho ecabanga ngokuhlolwa kwezakhi zofuzo ukuze abone ukuthi unalesi simo, kubalulekile ukuhlangana nomeluleki wezakhi zofuzo kusengaphambili. Bangakusiza uqonde imiphumela yemiphumela yokuhlolwa futhi bakusize uyilungiselele.
Ziyini izimpawu zalesi sifo?
Izimpawu zesifo sikaHuntington zingahlukaniswa ngezigaba ezintathu eziyinhloko: amakhono okunyakaza, ukusebenza kwengqondo, kanye nezinguquko zokuziphatha. Abantu abaningi abanalesi sifo bahlangabezana nezimpawu kuzo zonke izindawo ezintathu. Lezi zimpawu zivame ukuvela kuye ngesigaba sesifo.
| Isigaba salesi sifo | Izimpawu ezivame ukubonakala |
|---|---|
| Isigaba Sokuqala | Izinguquko zincane kakhulu ngalesi sikhathi, ngakho-ke kunzima ukuzibona kalula.
|
| Isigaba Esiphakathi | Izimpawu ziqala ukuthinta impilo yansuku zonke kakhulu.
|
| Isigaba Sokugcina | Kulesi sigaba, isiguli asikwazi ukwenza lutho ngokwaso futhi sincike ngokuphelele kwabanye.
|
Izimpawu zesifo sikaHuntington (JHD) ezinganeni ezincane
Uma ingane noma umuntu osemusha eba nalesi sifo, singathuthuka ngokushesha. Kunezimpawu eziningana ezihlukile ezingabonakala:
- Ukuqina kanye nobunzima bokuhamba
- Ubunzima bokugxila
- Ukungabikho emsebenzini wesikole ngokuzumayo
- Ukuthuthumela
- Ukuquleka
Ungasithola kanjani lesi sifo?
Uma lesi sifo sisheshe sitholakale, kulapho ungagcina khona impilo yakho isikhathi eside. Uma unezimpawu, udokotela wakho uzobuza ngomlando wezokwelapha womndeni wakho futhi enze ukuhlolwa ngokomzimba. Ngaphezu kwalokho, bazokwenza izivivinyo eziningana ezihlobene nesimiso sezinzwa.
- Ukuzindla
- Amandla emisipha
- Ibhalansi yomzimba
- Ukubona nokuzwa
- Inkumbulo kanye nekhono lokucabanga
Ngaphezu kwakho konke, indlela engcono kakhulu yokuqinisekisa ukuthi lesi sifo sikhona iwukuhlola izakhi zofuzo . Lokhu kungakutshela ngokuqinisekile ukuthi unezakhi zofuzo ze-HD ezingasebenzi kahle emzimbeni wakho noma cha.
Iphathwa futhi iphathwa kanjani?
Nakuba kungekho ukwelashwa kwalesi sifo, kunezindlela eziningi zokwelapha ezingasiza ekulawuleni izimpawu futhi zenze impilo ibe lula. Kukhona isisho phakathi kodokotela esithi, "Singase singangezi iminyaka empilweni yakho, kodwa singangeza impilo eminyakeni yakho." Kuyiqiniso. Into ebaluleke kakhulu ukuba nochwepheshe abavela emikhakheni ehlukene basebenzisane ukuze bakwelaphe.
Imithi
Udokotela angase anikeze imithi ehlukahlukene yokulawula izimpawu.
- Ukulawula ukunyakaza: Uhlobo lwemithi olubizwa ngokuthi `ama-VMAT2 inhibitors` (isib. i-Deutetrabenazine, i-Tetrabenazine) lusetshenziselwa ukunciphisa ukunyakaza okungalawulwa njenge-`Chorea`.
- Ngezinkinga zengqondo:Kunikezwa imithi yokwelapha ukucindezeleka kanye nemithi yokuqinisa imizwa ukuze kwelashwe izimo ezinjengokucindezeleka nokukhathazeka.
Ukwelapha
Lezi ziyingxenye ebaluleke kakhulu yokuphathwa kwezifo.
- Ukwelashwa ngokomzimba: Kusiza ekunciphiseni ukuwa ngokuthuthukisa ukuhamba kanye nokulinganisela.
- Ukwelashwa ngokomsebenzi: Kufundisa amasu nemishini edingekayo ukuze kuqhutshekwe nemisebenzi yansuku zonke (ukugqoka, ukudla).
- Ukwelapha ngenkulumo: Kusiza ngezinkinga zokukhuluma nokugwinya.
Ukudla okunempilo kanye nezinguquko zendlela yokuphila
Iziguli zikaHuntington zinamathuba amaningi okunciphisa isisindo. Lokhu kungenxa yokuthi umzimba ushisa amakhalori amaningi ngenxa yokunyakaza okuvamile kanye nobunzima bokugwinya ukudla. Ngakho-ke, kubaluleke kakhulu ukudla ukudla okunamakhalori amaningi, okunomsoco, futhi okugayeka kalula, njengoba kwelulekwa uchwepheshe wezokudla .
Ngaphezu kwalokho, ukuzivocavoca umzimba, ukudla ukudla kwaseMedithera, ukugwema utshwala, ukulala kahle, kanye nokunciphisa ukucindezeleka nakho kuyasiza kakhulu ekulawuleni lesi sifo.
Umlayezo Wokuya Nawe Ekhaya
- Isifo sikaHuntington siyisifo sofuzo esitholakala emindenini. Kuvamile ukuzizwa wesaba uma ufunda ngaso, kodwa into ebaluleke kakhulu ukuqaphela.
- Nakuba kungekho ikhambi eliphelele lalokhu okwamanje, kunezindlela eziningi zokwelapha ezingakusiza ukulawula izimpawu zakho futhi uphile impilo engcono.
- Uma lesi sifo sisheshe sitholakale, kuba lula ukulawula izimpawu nokwenza impilo ibe lula.
- Kubalulekile ukufuna ukwesekwa yithimba lezokwelapha eliqukethe ochwepheshe abahlukahlukene, njengodokotela wakho, isazi sezokwelapha ngomzimba, kanye nomeluleki.
- Ukuthi uzohlolwa yini izakhi zofuzo noma cha kuyisinqumo somuntu siqu, kodwa cela usizo kumeluleki wezakhi zofuzo ngaphambi kokwenza leso sinqumo.
- Awuwedwa. Kunezinhlangano zokusekelana ezingakusiza wena nabanakekeli bakho abaphila nalesi sifo. Bhekana nalesi simo ngethemba nesibindi.
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