Kodi maso anu akuchepa pang'onopang'ono? Tiyeni tiphunzire za (Cone-Rod Dystrophy) iyi!

Kodi inuyo kapena munthu amene mumamudziwa, makamaka kuyambira ali mwana, mwakhala mukusintha kulikonse m'maso mwanu, monga kusawona bwino, kapena kukhudzidwa ndi kuwala? Kapena mwakhala mukuvutika kusiyanitsa mitundu? Nthawi zina zinthu izi zimakhala zosavuta. Lero tikambirana za matenda osowa a maso omwe amafunika chisamaliro pang'ono, koma omwe anthu ambiri sadziwa. Izi zimatchedwa `(Cone-Rod Dystrophy)` kapena `(CRD)`.

Kodi Cone-Rod Dystrophy ndi chiyani?

Mwachidule, `(Cone-Rod Dystrophy)` ndi matenda omwe amakhudza gawo la retina mkati mwa maso athu. Chomwe chimachitika pamenepa ndichakuti maso athu amafooka pang'onopang'ono, kutanthauza kuti, pang'onopang'ono, pang'onopang'ono. Nthawi zina, izi zingayambitse kutaya kwathunthu masomphenya komanso ngakhale khungu . Ichi ndi chowonadi chomvetsa chisoni.

Chifukwa chachikulu cha kutayika kwa masomphenya kumeneku ndi kuwonongeka kwa mitundu iwiri ya maselo omwe amazindikira kuwala mu retina yathu, otchedwa cones ndi rods . Kunena zoona, maselo amenewa amafa pang'onopang'ono. Mawu akuti ``Dystrophy'' mu ``Cone-Rod Dystrophy'' amatanthauza kuti maselo amenewa amawonongeka pang'onopang'ono.

Tangoganizani, ngati diso lathu lili ngati kamera, maselo a cone awa ``(Cones)`` ndi maselo a rod ``(Rods)`` ali ngati madontho ang'onoang'ono pa ``(film)`` ya kamera imeneyo. Ndi omwe amajambula kuwala, kuzindikira mitundu, kupanga zithunzi, ndikuzitumiza ku ubongo wathu.

• Ma Cone: Awa ndi maselo omwe amatithandiza kuona mitundu , ndipo amaperekanso masomphenya akuthwa komanso omveka bwino (makamaka tikayang'ana patsogolo) .
• Ndodo: Izi zimatithandiza kuona mumdima komanso m'masomphenya ozungulira, kutanthauza zinthu zomwe sizili patsogolo pathu mwachindunji .

Mu CRD, maselo a koni nthawi zambiri amakhala oyamba kuwonongeka, koma nthawi zina mitundu yonse iwiri ya maselo imatha kuwonongeka nthawi imodzi.

Matendawa, otchedwa ``(CRD)``, ndi osowa kwambiri , zomwe zikutanthauza kuti si matenda omwe amakhudza aliyense. Komanso, nthawi zambiri amakhala ndi majini , zomwe zikutanthauza kuti ndi chinthu chomwe chimapatsiridwa kuchokera ku mibadwomibadwo kupita ku mibadwomibadwo. Matendawa nthawi zambiri amayamba ali mwana kapena akakula .

Kodi mukudziwa zizindikiro za izi?

Ngakhale kuti zizindikiro za CRD zimatha kusiyana pang'ono kuchokera kwa munthu ndi munthu, pali zizindikiro zina zomwe zimaonekera. Izi zimawonjezeka pakapita nthawi.

• Kufooka pakati pa diso: Ichi nthawi zambiri chimakhala chizindikiro choyamba chodziwika. Nthawi zambiri chimayamba ali mwana. Kunena zoona, zikuwoneka kuti zomwe zikuoneka mwachindunji sizikuoneka bwino.
• Kuopa kuwala: Kumva kukhudzidwa kwambiri ndi kuwala kowala: N'kovuta kuona dzuwa kapena magetsi akazima, ngati kuti maso akusintha kukhala abuluu.
• Kuvuta kusiyanitsa mitundu: Pakapita nthawi, mitundu imatha kuchepa kuoneka ndipo ingayambitse khungu la mtundu wonse .
• Khungu la usiku (Nyctalopia): Kuona kumakhala kovuta kwambiri usiku m'malo opanda kuwala kwenikweni.
• Kutaya masomphenya a m'mbali mwa diso: Sikuti masomphenya omwe mumawaona patsogolo okha amachepa pang'onopang'ono, komanso zomwe mumawona mbali zonse ziwiri za diso lanu zimachepa pang'onopang'ono.
• Kutaya konse kwa maso (khungu): Iyi ndi gawo loopsa kwambiri la matendawa.

Zizindikiro zimenezi sizibwera mwadzidzidzi. Zimayamba pang'onopang'ono. Choncho nthawi zina, poyamba, mungaganize kuti si nkhani yaikulu.

N’chifukwa chiyani izi zimachitika? Kodi zifukwa zake ndi ziti?

Monga tanenera kale, `(CRD)` ndi matenda a majini makamaka . Izi zikutanthauza kuti, amayamba chifukwa cha kusintha kwina (kusintha kwa majini) komwe kumachitika mu `(DNA)` yathu . Taganizirani, `(DNA)` ndiye pulani ya thupi lathu. Ngati pali cholakwika chaching'ono mu pulani imeneyo, chingayambitse matenda ngati awa.

Kafukufuku wapeza kuti pali mitundu yosiyanasiyana ya majini yosachepera 28 yomwe ingayambitse `(CRD)`. Pali njira zingapo zomwe tingalandire mitundu iyi ya majini:

• `(Autosomal dominant)`: Pankhaniyi, matendawa amatha kuchitika ngakhale jini yolakwikayo itachokera kwa kholo limodzi lokha , kaya mayi kapena bambo.
• `(Autosomal recessive)`: Mu njira iyi, matendawa amapezeka pokhapokha ngati jini yolakwikayo yachokera kwa makolo onse awiri . Ngati ikuchokera kwa kholo limodzi lokha, munthuyo akhoza kukhala wonyamula matendawa, koma sadzawonetsa zizindikiro.
• `(X-linked)`: Izi zimachitika chifukwa cha jini yolumikizidwa ndi chromosome ya X. Chiwopsezo chimadalira kholo lomwe lili ndi jini yolakwika.

Masinthidwe anayi a majini omwe angayambitse Cone-Rod Dystrophy ndi awa:

• `(ABCA4)`
• `(CRX)`
• `(GUCY2D)`
• `(RPGR)`

Ngakhale kuti izi ndi zovuta pang'ono pankhani ya zamankhwala, majini awa ndi omwe amathandiza maselo a cone ndi ndodo m'maso mwathu kugwira ntchito bwino. Choncho pakakhala vuto ndi majini awa, ntchito ya maselo amenewo imachepa.

Kodi mumazindikira bwanji matendawa molondola? (Kuzindikira)

Ngati inu kapena mwana wanu muli ndi zizindikiro izi, muyenera kuonana ndi katswiri wa maso . Iye angakuuzeni motsimikiza ngati izi ndi matenda a CRD kapena matenda ena a maso.

Amagwiritsa ntchito njira zingapo pozindikira matenda:

1. Funsani za mbiri yanu yachipatala ndi zizindikiro zake: zinthu monga kusintha kwa masomphenya anu komanso ngati pali wina aliyense m'banja mwanu amene wakhala ndi mavuto ofanana ndi anu.

2. Kuyezetsa maso kwathunthu kumachitika: Izi zingaphatikizepo mayeso angapo.

• Mayeso a kuwona bwino:Kulola anthu kuwerenga makalata ndikuona momwe angawonere kutali.
• Kuyesa kuwona mitundu: Kuwona ngati mungathe kusiyanitsa mitundu molondola.
• Kuyesa nyali yodulidwa: Kuyang'ana mkati mwa diso ndi chida chapadera chokulitsa.

Ngakhale mayeso awa ndi ofunikira, mayeso ofunikira komanso enieni otsimikizira Cone-Rod Dystrophy ndi Electroretinography. Iyi ndi mayeso apadera. Amayesa mwachindunji ntchito yamagetsi ya retina. Ngati pali CRD, mayesowa amatha kuzindikira machitidwe enaake a ntchito (kapena kusowa kwa ntchito).

Kuphatikiza apo, dokotala wanu wa maso angakulangizeni kuti muyesedwe majini . Izi ndizoona ngati muli ndi kusintha kwa majini komwe kumadziwika kuti kumayambitsa CRD. Izi ndizofunikira makamaka ngati wina m'banja mwanu (amayi, abambo, abale, ana) ali ndi CRD, kapena ngati muli ndi chiopsezo chopatsira matendawa kwa ana anu.

Kodi mankhwala ake ndi otani? Kodi angachiritsidwe?

Kunena zoona, pakadali pano palibe mankhwala a matendawa `(Cone-Rod Dystrophy)`. Ichi ndi chinthu chomvetsa chisoni kwambiri.

Komabe, palibe chifukwa chotaya chiyembekezo kotheratu. Njira yomwe ilipo pano ndikuchepetsa kupitirira kwa matendawa ndikuchiza zizindikiro ndi zovuta zilizonse zomwe zingabuke. Dokotala wanu wa maso angakuthandizeni pa izi. Izi zitha kuphatikizapo:

• Chitetezo ku kuwala: Kugwiritsa ntchito magalasi a dzuwa, magalasi opaka utoto, kapena magalasi olumikizana kungathandize kuchepetsa chiopsezo cha kuwonongeka kwa maselo a retina chifukwa chokhudzidwa ndi kuwala.
• Kukonza maso: Poyamba matendawa, magalasi angathandize kuchepetsa masomphenya.
• Zipangizo zothandizira anthu osaona bwino: Izi ndi zipangizo zomwe zimathandiza anthu osaona bwino kuchita ntchito za tsiku ndi tsiku. Zimayambira pa magalasi okulirapo mpaka zipangizo zamakono monga mapulogalamu apakompyuta owerengera pazenera.
• Kukonzanso maso: Iyi ndi mtundu wapadera wa maphunziro omwe amakuphunzitsani momwe mungathanirane ndi kuchita ntchito za tsiku ndi tsiku zomwe mwataya maso.
• Zakudya zowonjezera: Pali chikhulupiriro chakuti mavitamini ndi michere ina (micronutrients) ingachedwetse kukula kwa CRD. Komabe, izi ziyenera kumwedwa pokhapokha ngati dokotala alangiza . Dokotala wanu wa maso adzakuuzani zomwe zili zabwino ndi zomwe zili zoipa.
• Chithandizo cha thanzi la maganizo:Kusiya kuona kungakhale chinthu chodetsa nkhawa komanso choopsa kwambiri. Anthu ambiri omwe ali ndi CRD amatha kukumana ndi zizindikiro monga nkhawa kapena kuvutika maganizo. Chifukwa chake, kufunafuna uphungu ndi chithandizo cha matenda amisala kungathandize kwambiri pothana ndi malingaliro amenewa ndikuthana nawo.

Kodi padzakhala mankhwala atsopano mtsogolomu? (Kafukufuku)

Ofufuza akufufuza ngati njira zochiritsira majini zingagwiritsidwe ntchito pochiza Cone-Rod Dystrophy. Ndiko kuti, njira zomwe zingakonze majini olakwika omwe tidakambirana.

Komabe, mankhwala awa akadali kumayambiriro kwenikweni kwa kafukufuku . Izi zikutanthauza kuti padzatenga zaka zingapo tisanalandire mankhwala awa. Komanso, adzatulutsidwa pokhapokha ngati maphunziro amenewo atsimikizira kuti mankhwala awa ndi otetezeka komanso ogwira mtima .

Choncho, ngakhale kuti n'kovuta kukhala ndi chiyembekezo chachikulu pa chithandizochi pakadali pano, ndikofunikira kukumbukira kuti izi zingathandize anthu omwe ali ndi CRD mtsogolo .

Kodi munthu amene ali ndi vuto la cone-rod dystrophy (CRD) amakumana ndi chiyani?

Zotsatira za CRD nthawi zambiri zimayamba ali ana . Ana omwe ali ndi CRD amatha kukhala ndi mavuto a masomphenya asanakwanitse zaka 10. Chifukwa chake, nthawi zina aphunzitsi a kusukulu ndi omwe amayamba kuzindikira kusintha kwa masomphenya a mwana.

Anthu ambiri omwe ali ndi CRD amataya maso mpaka kufika poti amakhala akhungu mwalamulo akafika zaka 20. Komabe, kwa anthu ena, matendawa amakula pang'onopang'ono, kapena kuwonongekako sikovuta kwambiri, ndipo vutoli silingapitirire mpaka atakwanitsa zaka 30 kapena 40 .

Kodi chiyembekezo cha vutoli n'chiyani?

`(CRD)` si matenda oopsa . Izi zikutanthauza kuti sapha. Komabe, ndi matenda omwe amachititsa kusokonezeka kwakukulu kwa moyo ndipo pamapeto pake amatsogolera kulumala .

Koma mungaphunzire kukhala ndi vuto la masomphenya , makamaka mothandizidwa ndi madokotala, mautumiki othandizira, ndi zinthu zina.

Chofunika kwambiri ndi kumvetsetsa kuti simuli nokha. Musaope kupempha thandizo.

Kodi pali njira yopewera izi?

Monga tanenera kale, `(Cone-Rod Dystrophy)` ndi matenda omwe amayamba chifukwa cha kusintha kwa majini . Chifukwa chake, kutengera zomwe zapezeka pano, palibe njira yopewera matendawa `(CRD)` kapena kuchepetsa chiopsezo chotenga matendawa . Ofufuza akufufuzabe ngati pali zifukwa zina kapena zinthu zomwe zimakhudza matendawa.

Ngati ndili ndi CRD, ndimadzisamalira bwanji?

Ngati muli ndi `(CRD)`, ndikofunikira kwambiri kupita kwa dokotala wa maso nthawi zonse kuti akakuyezeni maso.Kenako amatha kuyang'anira kusintha kwa maso anu, kusintha chithandizo chanu moyenera, ndikukupatsani chidziwitso chatsopano.

Dokotala wanu wa maso ndi ena othandizira azaumoyo angakuthandizeni kukhala ndi moyo ndi CRD. Angakuthandizeni kuzolowera ndikukonzekera tsogolo. Angakuthandizeninso kudziwa za mankhwala atsopano ndikukupatsani chidziwitso.

Kodi ndifunse chiyani kwa dokotala/madam?

Mukapita kwa dokotala, zingakuthandizeni kufunsa mafunso ngati awa:

• Kodi maso anga achepa bwanji?
• Kodi matenda a `(CRD)` amenewa adzapitirira bwanji? Kodi mungaganizire nthawi yomwe adzatenge?
• Kodi ine ndi banja langa tiyenera kupita kukayezetsa majini kuti tidziwe chomwe chinayambitsa kusintha kwa DNA?
• Kodi ndingachite chiyani tsopano kuti ndichepetse kufalikira kwa matendawa?
• Kodi pali mapulogalamu kapena zinthu zina zomwe ndingagwiritse ntchito kuti zindithandize kusintha momwe zinthu zilili panopa komanso kukonzekera kusintha kwamtsogolo?

Mukataya masomphenya anu chifukwa cha Cone-Rod Dystrophy, mungamve ngati muli nokha komanso kuti simuli nokha ndi dziko lapansi komanso anthu ena. Ndizachibadwa kukhala ndi nkhawa komanso nkhawa ndi zomwe zisintha mtsogolo.

Komabe, si vuto lomwe muyenera kukumana nalo nokha . Dokotala wanu wa maso, madokotala ena, ndi akatswiri adzakupatsani chisamaliro, chithandizo, chitsogozo, ndi zinthu zomwe mukufuna. Musaope kuwapempha thandizo. Adzakuthandizani kuzolowera ndi kuthana ndi mavuto a kutayika kwa masomphenya.

Pomaliza, uthenga wopita nawo kunyumba:

Matenda a maso otchedwa Cone-Rod Dystrophy (CRD) ndi matenda oopsa kwambiri omwe amapha maselo a maso athu otchedwa cones ndi rods, zomwe zimapangitsa kuti maso athu asaone bwino. Nthawi zambiri amayamba ali ana.

Ngakhale pakadali pano palibe mankhwala, pali njira zambiri zothanirana ndi zizindikiro, kuchepetsa kupitirira kwa matendawa, komanso kukuthandizani kukhala ndi vuto la masomphenya.

Ngati inu kapena munthu amene mumamudziwa ali ndi zizindikirozi, pitani kwa dokotala wa maso nthawi yomweyo . Ndikofunikira kwambiri kupeza matenda ndi chitsogozo cholondola.

Kumbukirani, simuli nokha. Pezani chithandizo ndi chithandizo chomwe mukufuna. Kukhala ndi chiyembekezo n'kofunika kwambiri!

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