Asizuzi nje kuphela inkangeleko neetalente zethu kubazali bethu, kodwa ngamanye amaxesha sinokuzizuzisa izifo. Isifo sikaHuntington sisifo esibi esichaphazela iiseli zemithambo-luvo engqondweni kwaye sidluliselwa kwizizukulwana ngezizukulwana . Usenokuziva usoyika xa usiva eli gama, kodwa kubaluleke kakhulu ukuliqaphela. Ke namhlanje, masithethe ngalo ngendlela elula neqondakalayo.
Yintoni kanye kanye iSifo sikaHuntington?
Ngamafutshane, isifo sikaHuntington sisifo semfuza esidluliselwa kwizizukulwana ngezizukulwana. Sibangela ukuba iiseli zemithambo-luvo ebuchotsheni zife kancinci kancinci. Ngokuhamba kwexesha, oku kunokukhokelela kutshintsho kwizakhono zethu zokunyakaza, ukuqonda, kwanemood. Oku kunokunyusa umngcipheko wokuba neengxaki zempilo yengqondo ezifana nokudakumba kunye nokuxhalaba.
Nangona esi sifo sinokuqala nakweyiphi na iminyaka, iimpawu zihlala zibonakala phakathi kweminyaka engama-30 nama-40. Nangona kunjalo, ukuba esi sifo siqala ebuntwaneni, okanye ngaphambi kweminyaka engama-20, sibizwa ngokuba sisifo sikaHuntington solutsha (JHD).
Okwangoku akukho nyango lwesi sifo. Nangona kunjalo, kukho unyango oluninzi olunokunceda ukulawula iimpawu nokwenza ubomi bube lula. Ngoko ke musa ukuphelelwa lithemba.
Kuqhelekile ukuziva uxinezelekile xa ufunda ngesifo esifana nesi. Nangona kunjalo, ukufumana uncedo kumncedisi wentlalontle, umcebisi, okanye iqela lenkxaso labantu abaphila nesi sifo kunokuba luncedo olukhulu ekuhlangabezaneni nale meko. Ngoncedo lweqela leengcali zonyango ezahlukeneyo, nomntu onesifo sikaHuntington unokuphila ubomi bakhe bodwa iminyaka emininzi.
Yintoni ebangela esi sifo?
Isizathu esiphambili soku sisiphene semfuza. Khawucinge ukuba iseti yemiyalelo yomsebenzi ngamnye emzimbeni wethu, njengeresiphi, ibhalwe kwimfuza zethu. Sonke sinemfuza ebangela isifo sikaHuntington (imfuza ye-HD). Kodwa kwezinye iintsapho, ikopi yesi mfuza enesiphene neguqukileyo ifunyanwa ngabazali ukuya ebantwaneni.
Ukuba umama okanye utata wakho unesifo, unethuba elingama-50% lokufumana i-gene enesiphene kwaye ukhulele kwesi sifo. Oko kuthetha ukuba usenokusifumana okanye ungasifumani. Kufana nokuphosa ingqekembe.
Kubalulekile ukwazi ezinye izinto ezimbalwa ngale nto:
- Le gene inesiphako inokufunyanwa ngamadoda nabafazi.
- Ukuba awuyifumani ilifa le-gene enesiphene, awusoze ube nesifo sikaHuntington, kwaye awuyi kusidlulisela esi sifo kubantwana bakho.
- Esi sifo asidluli kwizizukulwana . Oko kukuthi, akukho ndlela umntwana anokuba naso ukuba utatomkhulu wayenaso kodwa utata engekho.
Ukuba wena okanye umntu kusapho lwakho ucinga ngovavanyo lwemfuza ukuze kubonwe ukuba unale meko, kubalulekile ukudibana nomcebisi wemfuza kwangaphambili. Banokukunceda uqonde iziphumo zovavanyo kwaye bakuncede uzilungiselele.
Zithini iimpawu zesi sifo?
Iimpawu zesifo sikaHuntington zingahlulwahlulwa zibe ziindidi ezintathu eziphambili: izakhono zokunyakaza, ukusebenza kwengqondo, kunye notshintsho kwindlela yokuziphatha. Abantu abaninzi abanesifo bafumana iimpawu kuzo zonke ezi ndawo zintathu. Ezi mpawu zihlala zibonakala ngokuxhomekeke kwinqanaba lesifo.
| Inqanaba lesi sifo | Iimpawu eziqhelekileyo |
|---|---|
| Inqanaba lokuqala | Utshintsho lubonakala lungabonakali kangako ngeli xesha, ngoko ke kunzima ukulubona lula.
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| Isigaba Esiphakathi | Iimpawu ziqala ukuchaphazela ubomi bemihla ngemihla ngakumbi nangakumbi.
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| Isigaba Sokugqibela | Kule nqanaba, isigulana asinakwenza nto sodwa kwaye sixhomekeke ngokupheleleyo kwabanye.
|
Iimpawu zesifo sikaHuntington (JHD) kubantwana abancinci
Ukuba umntwana okanye umntu oselula unesifo esi, sinokukhula ngokukhawuleza. Kukho iimpawu ezahlukeneyo ezinokubonakala:
- Ukuqina kunye nobunzima bokuhamba
- Ubunzima bokugxila
- Ukungabikho ngequbuliso emsebenzini wesikolo
- Iingxolo
- Ukuxhuzula
Indlela yokuxilonga esi sifo?
Okukhona isifo sifunyanwa ngokukhawuleza, kokukhona unokuqhubeka nobomi bakho ixesha elide. Ukuba uneempawu, ugqirha wakho uza kubuza ngembali yezonyango yosapho lwakho aze enze uvavanyo lomzimba. Ukongeza, baza kwenza uvavanyo oluninzi olunxulumene nenkqubo yemithambo-luvo.
- Ukucamngca
- Amandla emisipha
- Ibhalansi yomzimba
- Ukubona nokuva
- Inkumbulo kunye nobuchule bokucinga
Ngaphezu kwako konke, eyona ndlela ilungileyo yokuqinisekisa ngokuqinisekileyo ukuba isifo sikhona kukuvavanya imfuza . Oku kunokukuxelela ngokuqinisekileyo ukuba unayo na i-HD gene engalunganga emzimbeni wakho okanye akunjalo.
Iphathwa kwaye ilawulwa njani?
Nangona kungekho nyango lwesi sifo, kukho unyango oluninzi olunokunceda ukulawula iimpawu nokwenza ubomi bube lula. Kukho intetho phakathi koogqirha ethi, "Sisenokungongezi iminyaka ebomini bakho, kodwa sinokongeza ubomi kwiminyaka yakho." Yinyani leyo. Eyona nto ibalulekileyo kukuba neengcali ezivela kumacandelo ahlukeneyo zisebenzisane ukukunyanga.
Amayeza
Ugqirha angakunika amayeza ahlukeneyo okulawula iimpawu.
- Ukulawula intshukumo: Udidi lwamayeza abizwa ngokuba yi-`VMAT2 inhibitors` (umz. iDeutetrabenazine, iTetrabenazine) asetyenziselwa ukunciphisa intshukumo engalawulekiyo efana ne-`Chorea`.
- Kwiingxaki zengqondo:Ii-antidepressants kunye ne-mood stabilizers zinikwe ukunyanga iimeko ezinje ngokudakumba kunye nokuxhalaba.
Unyango
Ezi ziyinxalenye ebaluleke kakhulu yolawulo lwezifo.
- Unyango lomzimba: Lunceda ekunciphiseni ukuwa ngokuphucula ukuhamba kunye nokulinganisela.
- Unyango lomsebenzi: Lufundisa iindlela kunye nezixhobo ezifunekayo ukuze kuqhutyekwe nemisebenzi yemihla ngemihla (ukunxiba, ukutya).
- Unyango lokuthetha: Lunceda kwiingxaki zokuthetha nokuginya.
Ukutya kunye notshintsho kwindlela yokuphila
Izigulane zikaHuntington zinomngcipheko omkhulu wokunciphisa umzimba. Oku kungenxa yokuba umzimba utshisa iikhalori ezininzi ngenxa yokuhambahamba okuqhelekileyo kunye nobunzima bokuginya ukutya. Ngoko ke, kubaluleke kakhulu ukutya ukutya okuneekhalori eziphezulu, okunesondlo, nokulula ukugayeka, njengoko kucetyiswa yingcali yokutya .
Ukongeza, ukuzilolonga, ukutya ukutya okunesondlo saseMeditera, ukuphepha utywala, ukulala kakuhle, kunye nokunciphisa uxinzelelo nako kuluncedo kakhulu ekulawuleni esi sifo.
Umyalezo Wokuya Ekhaya
- Isifo sikaHuntington sisifo semfuza esifumaneka kwiintsapho. Kuqhelekile ukuba uzive usoyika xa ufunda ngaso, kodwa eyona nto ibalulekileyo kukwazi ngaso.
- Nangona kungekho nyango lupheleleyo loku, zininzi iindlela zonyango kunye nonyango olunokukunceda ukulawula iimpawu zakho kwaye uphile ubomi obungcono.
- Okukhona isifo sifunyanwa ngokukhawuleza, kokukhona kulula ukulawula iimpawu nokwenza ubomi bube lula.
- Kubalulekile ukufuna inkxaso yeqela lezonyango eliquka iingcali ezahlukeneyo, ezifana nogqirha wakho, ingcali ye-physiotherapist, kunye nomcebisi.
- Ukuba uza kuvavanywa okanye awuzukwenza uvavanyo lwemfuza sisigqibo somntu, kodwa cela uncedo kumcebisi wemfuza ngaphambi kokuba wenze eso sigqibo.
- Awuwedwa. Kukho amaqela enkxaso kunye nemibutho enokukunceda wena kunye nabanakekeli bakho abaphila nesi sifo. Jongana nale meko ngethemba nesibindi.
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