Kodi mulinso ndi kunjenjemera kosalamulirika? Kodi mumaiwala zinthu? Tiyeni tikambirane za matenda a Huntington!

Kodi nthawi zina mumamva ngati manja ndi miyendo yanu ikugwedezeka mwanjira yosamvetsetseka? Kapena mumamva ngati mukuiwala zinthu zomwe munkakumbukira bwino? Kapena kodi pali winawake amene mumamudziwa amene ali ndi vutoli? Chimodzi mwa zifukwa zomwe zimayambitsa zinthuzi ndi matenda otchedwa matenda a Huntington. Lero, tikambirana mwatsatanetsatane, m'njira yosavuta. Musachite mantha, ndikofunikira kwambiri kudziwa izi.

Kodi mukudziwa kuti matenda a Huntington ndi chiyani?

Mwachidule, matenda a Huntington ndi matenda a majini omwe amafalikira m'mibadwo yambiri. Ndi matenda omwe maselo ena muubongo wathu amawonongeka pang'onopang'ono ndikutaya ntchito yawo. Makamaka, amakhudza ziwalo za ubongo zomwe zimalamulira mayendedwe odzifunira monga kuyenda ndi kugwedezeka, komanso ziwalo za ubongo zomwe zimakhudzidwa ndi kukumbukira kwathu .

Zizindikiro zodziwika bwino za matendawa ndi mayendedwe osalamulirika monga kugwedezeka ndi kugwedezeka, komanso kusintha kwa malingaliro athu, khalidwe lathu, ndi umunthu wathu . Chomvetsa chisoni n'chakuti, zizindikirozi zimakula kwambiri pakapita nthawi. Koma musadandaule, kudziwa izi kungatithandize kukonzekera zambiri.

Kodi mitundu ikuluikulu ya matenda a Huntington ndi iti?

Pali mitundu iwiri ikuluikulu ya matenda a Huntington:

1. Kuyamba kwa matenda akuluakulu: Uwu ndi mtundu wofala kwambiri. Zizindikiro nthawi zambiri zimayamba kuonekera munthu akakwanitsa zaka 30.

2. Matenda a Huntington omwe amayamba msanga (ana): Mtundu uwu ndi wosowa kwambiri. Umakhudza ana aang'ono ndi achinyamata.

Kodi matendawa ndi ofala bwanji? Ndani amene ali ndi mwayi waukulu wowatenga?

Matenda a Huntington amapezeka padziko lonse lapansi, koma malinga ndi ziwerengero, amakhudza anthu pafupifupi atatu mpaka asanu ndi awiri mwa anthu 100 aliwonse . Ndi ofala kwambiri pakati pa anthu ochokera ku Europe (kutanthauza anthu ochokera ku Europe). Koma kumbukirani, ndi matenda a majini, kotero aliyense akhoza kudwala matendawa.

Kodi zizindikiro zomwe timaziona mu matendawa ndi ziti?

Matenda a Huntington amakhudza thupi lathu komanso maganizo athu. Tiyeni tiwone zizindikiro zimenezi.

Kusintha kwa thupi (zizindikiro zakuthupi)

Izi ndi zizindikiro zazikulu zakuthupi zomwe zingaonekere:

• Kusuntha kosalamulirika monga kugwedezeka kapena kugwedezeka kwa miyendo: Izi ndi zomwe madokotala amati chorea .
• Kulephera kulinganiza bwino : Kuvutika kuyenda kapena kuyimirira molunjika. Izi zimatchedwa ataxia .
• Kuyenda movutikira.
• Chakudya kapena madziKuvuta kumeza: Izi zimatchedwa dysphagia .
• Kulankhula molakwika.

Zizindikiro zakuthupi izi sizimaonekera mwadzidzidzi. Zimayamba ndi zinthu zazing'ono poyamba. Taganizirani izi, kukhala ndi vuto logwira cholembera bwino, kugwetsa zinthu nthawi zonse, kutaya mphamvu zanu. Koma pakapita nthawi, zizindikirozi zimatha kuwonjezeka pang'onopang'ono.

Zotsatira pa malingaliro ndi malingaliro (zizindikiro zamaganizo)

Kuwonjezera pa zizindikiro zakuthupi, munthu amene ali ndi matenda a Huntington angakumane ndi kusintha kwa maganizo ndi khalidwe monga:

• Kusintha kwa malingaliro: mkwiyo wobwerezabwereza, nkhawa, chisoni ( kukhumudwa ), kukwiya.
• Kuvuta kukumbukira, kusamala, komanso kuchita zinthu zambiri nthawi imodzi.
• Kuvuta kuphunzira zinthu zatsopano.
• Kuvuta kupanga zisankho ndi kuganiza mwanzeru.

Poyamba, zizindikiro izi zakuthupi ndi zamaganizo sizingakhudze kwambiri zochita zanu za tsiku ndi tsiku. Komabe, pakapita nthawi, zizindikirozi zingapangitse kuti zikhale zovuta kuchita zinthu paokha.

Kodi kunjenjemera kumeneku kwa miyendo (Chorea) kumawoneka bwanji mu matenda a Huntington?

Chimodzi mwa zizindikiro zoyambirira za matenda a Huntington ndi matenda otchedwa chorea . Izi zimachitika pamene ziwalo za thupi zimasuntha kapena kugwedezeka mosasamala komanso popanda kulamulira kwathu. Nthawi zambiri zimakhudza manja, zala, ndi minofu ya nkhope. Pambuyo pake, manja, miyendo, ndi thupi lapamwamba nazonso zimayamba kusuntha mosalamulirika. Chorea ingapangitse kuti zikhale zovuta kulankhula, kudya, ndi kuyenda. Ikhozanso kukhudza ntchito za tsiku ndi tsiku monga kuyendetsa galimoto.

Nchifukwa chiyani matenda a Huntington amapezeka? Kodi chifukwa chake ndi chiyani?

Chifukwa chachikulu cha matenda a Huntington ndi kusintha kwa majini athu. Kunena zoona, kumachitika chifukwa cha kusintha kwa majini otchedwa `HTT` . Jini la `HTT` limeneli limapanga puloteni yotchedwa `Huntingtin protein` m'thupi lathu. Puloteni iyi imathandiza maselo athu a mitsempha `(Neurons)` kugwira ntchito bwino.

Komabe, munthu amene ali ndi matenda a Huntington alibe chidziwitso chonse mu DNA yake kuti apange puloteni ya huntingtin moyenera. Zotsatira zake, puloteniyo imapanga molakwika, mu mawonekedwe osazolowereka, ndipo m'malo mothandiza maselo athu amitsempha , imayamba kuwawononga. Kusintha kwa majini kumeneku ndiko kumayambitsa maselo amitsempha kufa.

Kutayika kwa maselo amitsempha kumeneku kumachitika makamaka mu gawo la ubongo wathu lotchedwa ``Basal Ganglia`` lomwe limalamulira kayendedwe , komanso mu ``Brain Cortex`` yomwe imalamulira kuganiza kwathu, kupanga zisankho, ndi kukumbukira .

Kodi iyi ndi matenda obadwa nawo?

Inde, kusintha kwa majini komwe kumayambitsa matenda a Huntington kumatha kuchitika mwachibadwa. Ngati m'modzi mwa makolo anu enieni ali ndi kusintha kwa majini, inunso mutha kutenga nawo mbali. Izi zimatchedwa autosomal dominant pattern of inheritance . Pankhaniyi, ngati kholo limodzi lili ndi matendawa, mwana ali ndi mwayi wa 50% wopeza matendawa. Komabe, nthawi zambiri, munthu amatha kudwala matendawa kudzera mu kusintha kwa majini atsopano, ngakhale palibe m'banjamo amene adadwalapo matendawa kale.

Ndani ali pachiwopsezo chachikulu chotenga matendawa?

Ngakhale kuti aliyense akhoza kudwala matenda a Huntington, muli pachiwopsezo chachikulu ngati wina m'banja mwanu ali ndi matendawa. Monga tanenera kale, ngati m'modzi mwa makolo anu ali ndi matenda a Huntington, muli ndi mwayi wa 50% woti matendawa adwale.

Kodi ndi mavuto otani omwe angayambitse matenda a Huntington?

Matenda a Huntington ndi matenda omwe amapitirira, zomwe zikutanthauza kuti zizindikiro zimakula pang'onopang'ono pakapita nthawi . Mavuto omwe angabwere ndi awa:

• Matenda amisala : Izi zikutanthauza kuchepa kwa ntchito ya ubongo, kulephera kukumbukira, komanso kusintha kwakukulu kwa umunthu.
• Kuvulala kwakuthupi chifukwa cha mayendedwe osalamulirika kapena kugwa.
• Kuvuta kumeza chakudya kungayambitse kulephera kudya ndi kumwa bwino, zomwe zimapangitsa kuti munthu asamadye bwino .
• Kulephera kuyenda popanda thandizo.
• Matenda ofala , makamaka matenda a m'mapapo monga chibayo.

Ana omwe amadwala matenda a Huntington ali aang'ono amathanso kugwidwa ndi khunyu .

Kodi mumazindikira bwanji matendawa molondola? (Kuzindikira)

Dokotala, makamaka katswiri wa mitsempha , angakuuzeni ngati muli ndi matenda a Huntington. Iye adzakuyang'anirani ndikuyang'ana zizindikiro za kugwedezeka, kugwedezeka, kulinganiza bwino, kusinthasintha, komanso kugwirizana kwa thupi. Adzafunsanso ngati pali aliyense m'banja mwanu amene ali ndi matendawa. Nthawi zambiri, kuyezetsa majini kumafunika kuti atsimikizire matendawa.

Pofuna kupewa matenda ena omwe amayambitsa zizindikiro zofanana ndikutsimikizira kuti matenda a Huntington ndi otani, mayeso otsatirawa amachitika:

• Kuyezetsa magazi .
• Kuyesa Majini.
• Mayeso ojambulira ubongo: Mwachitsanzo, `( MRI - Magnetic Resonance Imaging)` ndi `(Kujambula kwa CT (CT scan - Computed Tomography scan).

Kodi kuyezetsa majini n'chiyani? Kodi kumazindikira bwanji izi?

Kuyezetsa majini ndi mayeso a magazi omwe amafufuza kusintha kwa DNA yanu. Dokotala wanu adzatenga chitsanzo cha magazi kuchokera kwa inu ndikutumiza ku labu kuti akayese DNA yanu. Kuyezetsa kumeneku kungakuuzeni motsimikiza ngati muli ndi kusintha kwa majini a HTT komwe kwatchulidwa pamwambapa. Mlangizi wa majini (munthu amene amagwira ntchito yoyesa majini) adzakufotokozerani njira ndi zotsatira zake.

Dokotala wanu angakulangizenso kuti achibale ena akapimidwe majini. Izi zithandiza kuwona chiopsezo chawo chotenga matendawa kapena kukhala ndi mwana ndi matendawa mtsogolo.

Kodi n'zotheka kudziwa ngati muli ndi matendawa zizindikiro zisanawonekere?

Inde, mungathe. Ngati kholo lanu kapena abale anu ali ndi matenda a Huntington, nanunso muli pachiwopsezo chachikulu chotenga matendawa. Kuyesa kwa majini kolosera za matenda kungakudziwitseni ngati muli ndi kusintha kwa majini komwe kumayambitsa matenda a Huntington zizindikiro zisanawonekere .

Anthu amayankha mosiyana ndi chidziwitsochi. Kudziwa kuti muli ndi jini kungakuthandizeni kukonzekera banja lanu ndikupanga zisankho zachuma. Komabe, zingakhalenso zovuta m'maganizo, makamaka popeza matendawa sangapeweke. Chifukwa chake, ndikofunikira kukambirana ndi mlangizi wanu wa majini ngati kuli bwino kuti muyezedwe musanayambe zizindikiro.

Kodi mankhwala a matenda a Huntington ndi ati?

Cholinga chachikulu cha chithandizo cha matenda a Huntington ndikukupangitsani kukhala omasuka momwe mungathere. Pakadali pano palibe mankhwala omwe angaletse matendawa, kuchedwetsa kuyambika kwa zizindikiro, kapena kuwaletsa. Chifukwa matendawa amakhudza thanzi lanu la thupi, la maganizo, komanso la malingaliro, mungafunike chithandizo chosiyanasiyana. Izi zikuphatikizapo:

• Kuchiza Thupi kapena Kuchiza Pantchito.
• Chithandizo cha Kulankhula.
• Uphungu.
• Mankhwala.

Ndi mankhwala ati omwe amaperekedwa kuti achepetse zizindikiro?

Dokotala wanu angakupatseni mankhwala osiyanasiyana kutengera zizindikiro zanu.

Mankhwala omwe nthawi zambiri amaperekedwa kuti achepetse chorea (kugwedeza) ndi awa:

• `Tetrabenazine`
• `Deutetrabenazine`
• `Haloperidol`

Kuti muchepetse zizindikiro zamaganizo (monga kusintha kwa maganizo ndi kuvutika maganizo), dokotala wanu angakupatseni mankhwala monga:

• Mankhwala oletsa kuvutika maganizo: Mwachitsanzo, Fluoxetine ndi Sertraline.
• Mankhwala oletsa matenda amisala: Mwachitsanzo, Risperidone ndi Olanzapine.
• Mankhwala oletsa kusokonezeka maganizo: Mwachitsanzo, lithiamu.

Chofunika: Mankhwala onsewa angayambitse zotsatira zina zoyipa. Mwachitsanzo, mungamve kupweteka kwa minofu mutatha kulandira chithandizo chamankhwala, kapena mungamve kutopa kapena kutsika kwa kuthamanga kwa magazi chifukwa cha mankhwala a chorea. Dokotala wanu adzakufotokozerani zonsezi musanayambe kulandira chithandizo, kuti mupange chisankho chodziwa bwino.

Kodi gulu la madokotala ndi ndani amene angakuthandizeni?

Gulu lachipatala lomwe limakuthandizani kuthana ndi matendawa lingakhale ndi akatswiri monga:

• Dokotala wodziwa bwino za ubongo ndi mitsempha (Neurologist).
• Katswiri wa zamaganizo.
• Mlangizi wa majini.
• Katswiri wa zamaganizo.
• Katswiri wa Zachipatala.
• Katswiri wothandiza anthu kulankhula.

Kodi pali njira yopewera matendawa kuti asakule?

Pakadali pano palibe njira yopewera kapena kuchepetsa chiopsezo chotenga matenda a Huntington. Komabe, ngati mukukonzekera kuyambitsa banja, lankhulani ndi mlangizi wa majini ndikuphunzira za kuyezetsa majini. Izi zingakuthandizeni kumvetsetsa chiopsezo chanu chokhala ndi mwana ndi matendawa. Tsopano ndizotheka kugwiritsa ntchito IVF (In Vitro Fertilization) ndi kuyezetsa majini kuti ana amtsogolo asalandire matenda a Huntington.

Kodi matenda a Huntington amakula bwanji pakapita nthawi? (Masitepe a matendawa)

Matenda a Huntington ndi matenda omwe amakula pang'onopang'ono pakapita nthawi. Ngakhale izi zimatha kusiyana pakati pa munthu ndi munthu, nthawi zambiri zimadutsa m'magawo otsatirawa:

• Poyambirira: Zizindikiro zake zimakhala zochepa. Mungamve kusakhazikika pang'ono, kusakhazikika, kukhala ndi vuto loganiza zinthu zovuta, komanso kuyenda pang'ono, kosalamulirika. Koma nthawi zambiri mumatha kuchita zinthu za tsiku ndi tsiku.
• Gawo lapakati:Kusintha kwa thupi ndi maganizo kungapangitse kuti zikhale zovuta kugwira ntchito, kuyendetsa galimoto, ndi kuchita ntchito zapakhomo. Kumeza kungakhale kovuta, kotero kulankhula ndi kudya kungakhale kovuta, koma sikungatheke. Pali chiopsezo chachikulu chogwa chifukwa chosowa mtendere. Ntchito zaumwini monga kusamba ndi kuvala zimatha kuchitidwabe.
• Gawo Lomaliza: N'zovuta kwambiri kuchita ntchito za tsiku ndi tsiku nokha. Anthu ambiri sangathe ngakhale kudzuka pabedi popanda thandizo. Pa gawoli, amafunika chisamaliro cha maola 24 kuti adye, asambe, komanso asamalire thanzi lawo.

Kodi pali mankhwala athunthu a izi?

Pakadali pano palibe mankhwala a matenda a Huntington. Komabe, mayesero azachipatala ( mayeso mwa anthu) akupitilira kuti aphunzire zambiri za matendawa ndikuwona momwe mankhwala atsopano angathandizire.

Kodi nthawi zambiri mungakhale ndi matendawa kwa nthawi yayitali bwanji?

Avereji ya nthawi yomwe munthu amakhala ndi moyo akapezeka ndi matenda a Huntington ndi zaka pakati pa 10 ndi 30 .

Kodi Matenda a Huntington ndi oopsa?

Matenda a Huntington si oopsa mwachindunji. Komabe, pakapita nthawi, matendawa amatha kupangitsa kuti zikhale zovuta kuchita zinthu za tsiku ndi tsiku. Kuchuluka kwa matendawa kumakula mofulumira kumasiyana malinga ndi munthu. Komabe, mavuto a matendawa, monga chibayo, kapena kuvulala chifukwa cha kugwa, angayambitse imfa.

Kodi ndingakhale bwanji bwino ndi vutoli? (Kudzisamalira)

Ngakhale matenda a Huntington atakhala aakulu, pali zinthu zomwe mungachite kuti mukhale ndi moyo wabwino kwambiri. Nazi malingaliro ena:

• Kuchita masewera olimbitsa thupi nthawi zonse: Kafukufuku wasonyeza kuti kuchita masewera olimbitsa thupi kumakupangitsani kumva bwino.
• Idyani zakudya zabwino: Dokotala wanu angakulangizeni kusintha zakudya zanu. Kusuntha kosalamulirika kumatha kutentha makilogalamu 5,000 patsiku. Chifukwa chake, kudya zakudya zoyenera ndikofunikira.
• Imwani madzi ambiri: Mukavutika kumeza chakudya, pamakhala chiopsezo chotaya madzi m'thupi. Chifukwa chake, madokotala amalangiza kuti musamadye madzi ambiri.
• Pezani gulu lothandizira: Funsani dokotala wanu za zinthu zomwe anthu ammudzi angakupatseni polumikizana ndi ena ngati inu.
• Kafukufuku wa ntchito zosamalira odwala: Nthawi ina, mungafunike ntchito zosamalira odwala kunyumba kapena ku malo osamalira okalamba. Dziwani izi pasadakhale.
• Sankhani mlangizi wodalirika: Pamene matendawa akupitirira, mungafunike kupatsa wina udindo wokhudza zachuma komanso kupanga zisankho. Ichi ndi chisankho chovuta koma chofunikira kupanga. Konzani zomwe mukuyembekezera musanayambe kuvutika ndi zizindikiro zanu.

Kumbukirani, ngakhale matenda a Huntington sangapewedwe, mutha kukonzekera. Zingatenge zaka kuti zizindikiro ziwonjezeke. Panthawi imeneyo, mumakhala ndi nthawi yopeza madokotala odalirika ndikupeza chithandizo chomwe mukufuna mtsogolo. Ngati inu kapena wina m'banja mwanu ali ndi matenda a Huntington, lankhulani ndi mlangizi wa majini za zomwe muyenera kudziwa.

Ndi mafunso ati omwe muyenera kufunsa dokotala wanu?

Mungathe kufunsa dokotala mafunso monga:

• Kodi vuto langa lidzakhala bwanji mtsogolomu? (Zomwe zidzachitike mtsogolomu)
• Kodi mumalimbikitsa chithandizo chanji?
• Kodi zotsatirapo zake zingakhale zotani chifukwa cha chithandizo?
• Kodi ndingapewe bwanji mavuto?
• Kodi ndingakonzekere bwanji kumapeto kwa matenda a Huntington?
• Kodi mungandilimbikitse kuti abale anga onse akayezedwe majini?

Matenda a Huntington angapangitse kuti zikhale zovuta kuti mudzisamalire pakapita nthawi. Zingakhale zovuta kudziwa kuti inuyo kapena munthu amene mumamukonda ali ndi matendawa. Komabe, chifukwa zizindikiro zingatenge zaka kuti ziwonekere, muli ndi nthawi yokonzekera chisamaliro cha nthawi zonse ndi chithandizo. Ngakhale mungafunike kupanga zisankho zofunika kwambiri zokhudzana ndi thanzi lanu, simuyenera kufulumira kupanga zisankho izi zomwe zingakhudze tsogolo lanu.

Zingakhale zosavuta kutaya chiyembekezo mukazindikira momwe matendawa adzakukhudzirani mtsogolo. Koma simuli nokha. Anthu ambiri amapeza chitonthozo akamalankhula ndi mlangizi wa zaumoyo wamaganizo kapena kulowa nawo gulu lothandizira. Ndipo kafukufuku akupitilizabe kuphunzira zambiri za njira zamankhwala zomwe zingakuthandizeni kukonza moyo wanu.

Uthenga Wopita Nawo Kunyumba:

Chabwino, kuchokera pa zomwe takambirana, pali zinthu zingapo zomwe muyenera kukumbukira :

• Matenda a Huntington ndi matenda a majini omwe amawononga maselo a ubongo.
• Izi zimayambitsa mayendedwe osalamulirika (chorea) ndi kusintha kwa maganizo .
• Ngakhale kuti palibe mankhwala athunthu a izi, pali mankhwala oletsa zizindikiro ndikuwonjezera chitonthozo.
• Ngati inu kapena wina m'banja mwanu mukuganiza kuti muli ndi matendawa, ndikofunikira kwambiri kufunafuna upangiri wachipatala komanso upangiri wa majini.
• Ngakhale kukhala ndi matendawa kungakhale kovuta, mukakonzekera bwino, kuthandizidwa, komanso kudziwa bwino, mutha kuthana ndi vutoli mwamphamvu. Kafukufuku wa mankhwala atsopano akupitirira, choncho khalani ndi chiyembekezo.

Ngati mukufuna kudziwa zambiri za izi, musaope kufunsa dokotala. Khalani ndi thanzi labwino!