Pane mumwe munhu mumhuri mako kana mumwe munhu waunoziva akangoerekana atanga kuita zvinhu zvisinganzwisisike here? Pamwe nhengo dzake dziri kugwinha-gwinha zvisingadzoreki here? Kana kuti ndangariro dzavo dziri kupera zvishoma nezvishoma, uye vanoita sevari kurasikirwa nesimba ravo rekare here? Zvakajairika kunzwa kutya patinoona zvinhu zvakadai. Nhasi tichataura nezvechirwere chinogona kukonzera zviratidzo izvi, asi chisinganyanyi kutaurwa nezvacho munharaunda. Ichi chirwere cheHuntington . Usavhunduke paunonzwa zita iri. Ngatitaurei nezvezvinhu zvese zviri nyore uye zvakajeka.
Saka, chii chinonzi Huntington's Disease?
Zvichitaurwa zviri nyore, chirwere cheHuntington chirwere chemajini chinoita kuti masero etsinga muuropi hwedu afe zvishoma nezvishoma nekufamba kwenguva, uye chinopfuudzwa kubva kuchizvarwa kuenda kune chimwe chizvarwa . Chinonyanya kukanganisa zvikamu zveuropi zvinodzora mafambiro edu, mafungiro, uye maitiro edu.
Izvi zvinokonzeresa kudzikira kwehunyanzvi hwekufambisa muviri, kufunga uye kuita sarudzo nekufamba kwenguva, uye njodzi yakakura yekuve nematambudziko ehutano hwepfungwa akadai sekuora mwoyo nekuzvidya mwoyo.
Kazhinji, zviratidzo izvi zvinotanga kuonekwa pakati pemakore makumi matatu nemakumi mana. Zvisinei, dzimwe nguva chirwere ichi chinogona kutanga muhudiki kana muhudiki, kureva kuti, vasati vasvika makore makumi maviri. Kana zvakadaro, tinochidana kuti Juvenile Huntington 's Disease (JHD) .
Parizvino hapana mushonga wechirwere cheHuntington. Asi musazvidya mwoyo. Kune mishonga yakawanda inoshanda inobatsira kudzora zviratidzo uye kuderedza kusagadzikana kwazvinokonzeresa. Uye kune zvakawanda zvaunogona kuita kuti urarame hupenyu huri nani nechirwere ichi.
Sei chirwere ichi chichiitika? Chinogarwa nhaka sei?
Izvi zvinokonzerwa nekusakwana kuri mune rimwe remajini edu. Muna 1993, masayendisiti akawana jini rinokonzera izvi. Jini iri riri matiri tose. Zvisinei, dzimwe mhuri dzinogona kunge dziine kopi yejini iri yakachinja . Jini iroro rakachinja rinopfuudzwa kubva kuvabereki kuenda kuvana.
Fungidzira kuti amai vako kana baba vako vane chirwere cheHuntington. Kana zvakadaro, une mukana we50% wekugara nhaka shanduko yemuviri inokonzera chirwere ichi. Zvakafanana nekukanda mari. Ungangoiwana kana kusaiwana.
- Jini iri rakachinja rinogona kugarwa nhaka pasinei nekuti munhurume kana kuti munhukadzi.
- Kana usina jini rakachinja, hauzombofi wakaita chirwere cheHuntington. Uye hauzopfuurire chirwere ichi kuvana vako.
- Chirwere ichi hachipfuuri zvizvarwa . Kureva kuti, kana baba vanacho, mwanakomana haagoni kuchikura asina baba.
Jeni iri rinotonga here kana kuti rinodzoreredza?
Zviri nyore kwazvo. Fungidzira kuti une majini maviri, rimwe raamai vako nerimwe rababa vako. Jini 'rinotonga' rakafanana nemwana akangwara kupfuura vose mukirasi. Kana aripo, simba rake riri kushanda. Jini rakachinja-chinja rinokonzera chirwere cheHuntington ndiro rinotongawo . Saka kunyangwe ukawana jini rakachinja kubva kumubereki mumwe chete, zvakakwana kukonzera chirwere chacho.
Kana iwe kana mumwe munhu wemumhuri mako ari kufunga nezvekuongorora majini, zvakakosha kutanga watsvaga mazano ezvemajini. Vanogona kukutsanangurira zvaunotarisira kubva mumhedzisiro yebvunzo.
Ndezvipi zviratidzo zvechirwere cheHuntington?
Zviratidzo zvechirwere cheHuntington zvinogona kukamurwa kuita zvikamu zvitatu zvikuru: hunyanzvi hwekufambisa, mashandiro ekuziva, uye maitiro . Zviratidzo izvi hazviwanzoonekwa zvese panguva imwe chete, asi zvinokura zvishoma nezvishoma muzvikamu zvakasiyana-siyana.
| Rudzi rwechiratidzo | Zviratidzo zvePakutanga | Hunhu hwepakati-danho |
|---|---|---|
| Mota | Kufamba-famba kwechiso, maoko, nemakumbo kusingadzoreki (chorea) . Kusagadzikana, kurasikirwa nemwero. Kunonoka kwekufamba kwemaziso. | (chorea) mamiriro ezvinhu ari kuipa. Kutadza kufamba. Kudonhedza zvinhu, kudhonza kakawanda. Kutadza kutaura nekumedza. |
| Kugona kufunga (Kufunga) | Kuomerwa nekuita zvinhu zvakawanda panguva imwe chete. Kukanganwa zvinhu (semuenzaniso, kugadzwa kwemisangano). Kuomerwa nekudzidza zvinhu zvitsva. Kuomerwa nekuita sarudzo. | Kuvhiringidzika kwakawanda. Kurasikirwa nendangariro kwakawanda. Kugona kufunga kwakaderera zviri pachena. Kusakwanisa kuronga zvinhu. |
| Maitiro uye Pfungwa | Kuora mwoyo, kuzvidya mwoyo. Kufunga kana kutaura chinhu chimwe chete kakawanda. Kukurumidza kutsamwa. Kushaya hope uye kurasikirwa nesimba remuviri. | Kuchinja kukuru kwehunhu. Pfungwa dzerufu kana kuzviuraya. Kudzikira kwehuremu. Kubuda kwezvirwere zvakaita se (OCD) kana (Bipolar disorder) . |
Zviratidzo zveKuguma Kwenguva
Panguva iyi, murwere anoda rubatsiro kubva kune vamwe kuti aite mabasa. Kufamba nekutaura zvinogona kumira zvachose. Zvisinei, kunyange panguva iyi, murwere anowanzo kwanisa kuziva vadikanwi vake.
Nzira yekuziva sei chirwere ichi?
Kana uine zviratidzo, chiremba wako achakubvunza nezvenhoroondo yezveutano hwemhuri yako uye oita bvunzo yemuviri. Vangangoda kuti vakuongororei tsinga dzemuviri uye bvunzo yemajini. Kuongororwa kwetsinga kunotsvaga:
- Kufungisisa
- Simba retsandanyama
- Kuenzana
- Kuona uye Kunzwa
- Mafungiro uye mamiriro epfungwa
- Kukwanisa kurangarira nekufunga
Kana chirwere ichi chikakurumidza kuonekwa, zviri nyore kuchengetedza hupenyu hwakanaka kwenguva yakareba. Unogonawo kuwana mukana wekutora chikamu muongororo itsva uye miedzo yekiriniki.
Nzira dzekurapa uye manejimendi
Kunyangwe pasina mushonga wakakwana weizvi parizvino, kune nzira dzakawanda dzekurapa dzinogona kudzora zviratidzo uye kuita kuti hupenyu huve nyore. Hazvisi zvemahara kuti vanachiremba vanoti, "Hatigoni kuwedzera makore muhupenyu hwako, asi tinogona kuwedzera hupenyu mumakore ako."
Chinhu chinonyanya kukosha kutsvaga rubatsiro kubva kuchikwata chenyanzvi kubva kumatunhu akasiyana-siyana. Chikwata ichi chinogona kusanganisira vanachiremba vetsinga, vanachiremba vemuviri, vanachiremba vemabasa, vanachiremba vekutaura, vanachiremba vepfungwa, uye nyanzvi dzezvekudya.
Mishonga
- Kudzora kufamba:Mishonga inobva mukirasi yeVMAT2 inhibitor (semuenzaniso Deutetrabenazine, Tetrabenazine) inoshandiswa kuderedza mafambiro asingadzoreki (chorea).
- Kune matambudziko ehutano hwepfungwa: Mishonga yakasiyana-siyana yekuora mwoyo uye yekudzikamisa mafungiro inonyorerwa kudzora kuora mwoyo, kuzvidya mwoyo, uye kumwe kuchinja-chinja kwemafungiro.
Kurapa
- Kurapa Kwemuviri: Kunobatsira kuderedza kudonha nekuvandudza kufamba, kuenzana, uye simba remuviri.
- Kurapa Kwebasa: Kunodzidzisa matekiniki nemidziyo kuti mabasa ezuva nezuva akadai sekudya nekupfeka zvive nyore.
- Kurapa Kutaura: Kunobatsira pakutaura uye pakumedza.
Kuchinja kwemararamiro uye kudya kunovaka muviri
Vanhu vane chirwere ichi vanogona kudzikira huremu nekuti miviri yavo inopisa macalorie akawanda uye vanoomerwa nekumedza. Saka, zvakakosha kudya chikafu chine hutano uye chine macalorie akawanda . Nhengo dzemhuri dzinogona kubatsira neizvi ne:
- Dzivisai kukanganiswa kusingakoshi panguva yekudya.
- Sarudza chikafu chiri nyore kutsenga nekumedza.
- Shandisa zvimedu zvekushandisa zvakagadzirwa nemakapu ane mashanga.
- Kurovedza muviri nguva dzose kwakakoshawo zvikuru. Asi unofanira kungwarira nezvekuchengetedzwa kwemuviri. Taura nenyanzvi yekurovedza muviri ine ruzivo uye gadzira hurongwa hwekurovedza muviri hunokunakira.
Mibvunzo yekubvunza chiremba wako
Kana iwe kana nhengo yemhuri yako ichinetseka nezvechirwere ichi, unogona kubvunza mibvunzo iyi paunenge uchitaura nachiremba wako:
- Chiremba, chirwere ichi chichakanganisa sei hupenyu hwangu?
- Ndeapi marapirwo akanakisa ezviratidzo zvangu?
- Kurapwa uku kunogona kupesana nemimwe mishonga yandiri kutora here?
- Zvakachengeteka here kuti ndirambe ndichityaira?
- Ndingataura sei nemhuri yangu nezvenyaya iyi?
Mharidzo Yekuenda Nayo Kumba
- Chirwere cheHuntington chirwere chinopfuudzwa kubva kuchizvarwa kuenda kune chimwe. Kana mubereki aine chirwere ichi, pane mukana we50% wekuti mwana achachigara nhaka.
- Kunyangwe pari zvino pasina mushonga wakakwana weizvi, kune mishonga inoshanda zvikuru yekudzora zviratidzo uye kuvandudza hupenyu.
- Kuonekwa kwechirwere nekukurumidza kwakakosha, sezvo zviratidzo zvichigona kugadziriswa zviri nani.
- Zvakakosha kuvaka rutsigiro rwakasimba runosanganisira vanachiremba vane hunyanzvi, varapi, uye nhengo dzemhuri.
- Matambudziko epfungwa akadai sekuora mwoyo uye kuzvidya mwoyo anogona kuitika nechirwere ichi, uye kurapa kwacho kwakakosha sekurapa zviratidzo zvemuviri.
- Tsvagiridzo itsva iri kuitwa nguva dzose panyaya iyi, saka ramba uine tariro. Ramba uchitaurirana nachiremba wako.
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