Kuomerwa nekufamba uye kutadza kudzora muviri: Ngatitaurei nezveFriedreich's Ataxia.

Wakambonzwa sekunge wava kungozununguka kamwe kamwe pawaifamba, kana kuti, wava kurasikirwa nepfungwa dzako here? Kana kuti unoona zvichikuomera here kutaura kana kusvitsa chimwe chinhu nemaoko ako? Izvi zvinogona kuva zviratidzo zvechimwe chinhu chakadzama kupfuura kuneta chete. Nhasi tiri kutaura nezvechirwere chisingawanzoitiki icho vanhu vazhinji munyika medu vasati vambonzwa nezvacho, asi zvakakosha kuziva nezvacho. Ndiyo Friedreich 's Ataxia (FA).

Chii chaizvo chinonzi Friedreich's Ataxia (FA)?

Zvichitaurwa zviri nyore, chirwere chemajini chinokuvadza tsinga dzedu zvishoma nezvishoma nekufamba kwenguva, zvichikonzera kufamba kwemuviri kusina kujairika, kuoma kufamba, kutaura, uye kumedza, pamwe nekutadza kuona nekunzwa.

Funga nezvetsinga dziri mumiviri yedu sewaya dzefoni. Tsinga idzi dzinotakura mashoko kubva kuuropi kuenda kumuviri wese. Kutaurirana uku kwakakosha kuti tifambise makumbo edu, tifambe, uye titaure. MuFA, tsinga idzi dzinopera simba zvishoma nezvishoma uye dzinomira kushanda zvakanaka.

Chirwere ichi chinokanganisawo chikamu cheuropi hwedu chinonzi cerebellum . Chikamu ichi chakakosha zvikuru pakudzora mafambiro emuviri wedu uye kuenzana. Asi chinhu chakanakisa ndechekuti, chirwere cheFA hachikanganisi ndangariro yako, njere, kana kugona kufunga. Izvi zvinoreva kuti, kunyangwe uine chirwere ichi, kugona kwako kufunga kunoramba kuri kwakajairika.

Sei izvi zviri kuitika?

Ichi chirwere chemajini chose. Izvi zvinoreva kuti chinoitika mumhuri kubva kuchizvarwa kuenda kune chimwe. Sezvamunoziva, zvese zviri mumiviri yedu zvinodzorwa nemajini. Chikonzero chechirwere ichi idambudziko riri mujini rinonzi FXN. Kuti munhu awane chirwere ichi, anofanira kugara nhaka makopi ejini iri reFXN risina kunaka kubva kuna amai nababa vake.

Jini reFXN rinorayira muviri kuti ugadzire puroteni yakakosha inonzi frataxin . Puroteni iyi inokosha kumasero edu, kunyanya masero etsinga nemasero emhasuru dzemwoyo, kuti agadzire simba. Kana uine majini maviri eFXN asina kunaka, muviri haugone kugadzira puroteni yakakwana yefrataxin.

Kana puroteni iyi ikashaikwa, masero haangogone chete kutadza kugadzira simba nemazvo, asi zvinhu zvine chepfu, kunyanya iron, zvinotanga kuungana mukati memasero. Nekufamba kwenguva, izvi ndizvo zvinokuvadza tsinga uye zvinokonzera zviratidzo zveFA.

Chinhu chakakosha ndechekuti mwana anowana chirwere ichi chete kana vabereki vese vari ivo vane jini iri risina kunaka. Kana mubereki mumwe chete ari iye ane jini iri, mwana haazowana chirwere ichi.

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Ndezvipi zviratidzo zvikuru zvechirwere ichi?

Zviratidzo zvinowanzotanga pakati pemakore mashanu negumi nemashanu. Zvisinei, dzimwe nguva zviratidzo zvinogona kuoneka nekukurumidza kana kuti gare gare, kana munhu akura.

Zviratidzo zvekutanga zvinonetsa kumira nekufamba, uye kurasikirwa nepfungwa dzakanaka . Vanachiremba vanoti kufamba uku hakuzorori . Nekufamba kwenguva, zviratidzo izvi zvinowedzera zvishoma nezvishoma, uye zviratidzo zvitsva zvinogona kuoneka.

Ungaongorora sei chirwere ichi nemazvo?

Kana iwe kana mwana wako mukaenda kuna chiremba, iye achatanga aongorora muviri wako uye obvunza mibvunzo nezvezviratidzo zvako. Iye achanyatsoteerera zvinotevera:

• Une matambudziko ekuenzanisa zvinhu here?
• Warasikirwa nekunzwa mumajoini ako here?
• Ko ma reflexes akarasika here?
• Pane zvimwe zviratidzo zvine chekuita netsinga here?

Kana chiremba akafungidzira kuti izvi zvinogona kunge zviri FA zvichibva pazviratidzo izvi, achakutumira kuti uongororwe majini. Kuburikidza nebvunzo iyoyo chete ndipo patinogona kuona kana paine dambudziko mujini reFXN.

Pamusoro pezvo, mimwe miedzo yakati wandei inogona kuitwa kuti ione kuti mwoyo netsinga zvakakuvara zvakadii:

• MRI kana CT scans yekuongorora uropi nemusana.
• Kuongororwa kweelectromyogram (EMG) kuti uone mashandiro emhasuru netsinga.
• Zvidzidzo zvekufambisa mitsipa zvinotarisa kumhanya kunoita mameseji kuburikidza netsinga.
• Tarisa mashandiro emoyo uchishandisa electrocardiogram (EKG/ECG) uye/kana echocardiogram ) .
• Kuongororwa kweropa kuti uone huwandu hweshuga muropa uye huwandu hwevhitamini E.

Ndezvipi zvinorapwa izvi?

Parizvino hapana mushonga weFA. Zvisinei, pane zvakawanda zvaunogona kuita kuti ugadzirise zviratidzo uye uite kuti hupenyu huve nyore. Munguva pfupi yapfuura, FDA muUnited States yakabvumidza mushonga unonzi Skyclarys (omaveloxolone) wechirwere ichi.

Chiremba wako, nyanzvi yekurapa muviri, nedzimwe nyanzvi vachashanda pamwe chete kuti vakubatsire. Hurongwa hwekurapa hunogona kusanganisira:

• Kuvhiyiwa kana kushandiswa kwezvitsigiro zvakakosha (braces) zvekurwadziwa kwemusana kana kuremara kwetsoka.
• Kurapa muviri kuti muviri urambe wakasimba sezvinobvira.
• Kurapa kwekutaura kwematambudziko ekutaura nekumedza.
• Zvishandiso zvakaita seshangu dzakakosha, tsvimbo, kana mawiricheya kuti zvive nyore kufamba.
• Mishonga yekurwadziwa kana zvichidikanwa.
• Kurapa zvirwere zvakaita sechirwere cheshuga uye zvirwere zvemwoyo zvinogona kuitika nechirwere ichi.

Hutano hwepfungwa nekuwana rutsigiro

Zvakajairika kunzwa wakaremerwa uye wakashamisika paunoziva kuti une chirwere chisingawanzoitiki, chisingarapiki chakadai. Ndosaka zvichikosha kufunga nezvehutano hwako hwepfungwa pamwe chete nehutano hwako hwemuviri.

Kana uchinetseka kana kuti uchishungurudzika, usatya kutaura nachiremba wako nezvazvo. Anogona kukutumira kuna chiremba wepfungwa.

Yeuka, kuora mwoyo chirwere chinorapika.Zvinogonawo kuva zororo guru kutaura nezvemanzwiro ako nemhuri neshamwari. Kubatana neboka rekutsigirana kwaunogona kusangana nevamwe vanhu vari kurarama nechirwere chakafanana newe kunogona kukubatsira kuti usanyanya kusurukirwa.