Une mapundu kana mapundu asingazivikanwe mumuviri wako here? Zvingave Schwannomatosis!

Dzimwe nguva unonzwa kurwadziwa kusingatsananguriki mumuviri wako here? Kana kuti dzimwe nguva unonzwa mapundu madiki pasi peganda rako? Kunyangwe tisinganyatso nyatsoteerera zvinhu izvi, dzimwe nguva zvinogona kuva zviratidzo zvechirwere. Nhasi, tichataura nezvechirwere chisingawanzonzwikwi, asi chakakosha kuziva nezvacho. Chirwere ichi chinonzi `Schwannomatosis`.

Chii chinonzi `Schwannomatosis`? Ngatinzwisise zviri nyore!

Zvichitaurwa zviri nyore, Schwannomatosis chirwere chinokonzerwa nekuchinja kwemajini edu. Apa ndipo panokura mabundu (mabundu) mutsinga dzemuviri wedu, ndiko kuti, mutsinga. Tinodana mabundu aya kuti `schwannomas`. Aya `schwannomas` anokura kubva mumhando yakakosha yesero inotenderedza tsinga dzedu uye inoshanda semudziyo unodzivirira tsinga. Masero aya anonzi `Schwann cells`. Anonyanya kuwanikwa mutsinga dzedu dzeropa - ndiko kuti, mutsinga dzinobva kuuropi nemusana, mumidzi yetsinga, uye uko tsinga dzinobatana netsandanyama.

Schwannomatosis chirwere chinowanzo ratidza kurwadziwa kwenguva refu muvechidiki, vane makore ari pakati pe20 ne40. Imhando imwe ye neurofibromatosis, boka remabundu anoumbwa mutsinga.

Kune mhando dzeSchwannomatosis here?

Ehe, kune mhando dzakawanda huru dzeSchwannomatosis. Idzi dzinorongwa zvichienderana nerudzi rwemajini runokonzera rudzi rumwe nerumwe. Mhando idzi ndeidzi:

• `NF2` - ine chekuita ne`schwannomatosis` (yaimbonzi `neurofibromatosis type 2`).
• `SMARCB1` - ine chekuita ne`schwannomatosis`.
• `LZTR1` - ine chekuita ne`schwannomatosis`.
• `22q` - `schwannomatosis` ine chekuita nayo (izvi zvinokonzerwa nekuchinja kwechikamu chechromosome 22).
• Schwannomatosis isina kutaurwa neimwe nzira (NOS).
• Schwannomatosis isiri kumwe kurongwa (NEC).

Kunyange zvazvo mazita aya angaita seakaoma, kuaisa mumapoka nenzira iyi kunobatsira zvikuru vanachiremba pakuongorora chirwere nemazvo uye kupa mazano akakodzera.

Dambudziko iri rinonzi `Schwannomatosis` hariwanzoitiki kangani?

Schwannomatosis ndiyo mhando isingawanzoonekwi ye neurofibromatosis. Kufungidzira kwakarurama kwevanhu vangani vane chirwere ichi kunosiyana. Dzimwe ongororo dzinoratidza kuti schwannomatosis ine chekuita neNF2 inogona kubata munhu mumwe chete pavanhu 30,000 . Kana dzimwe mhando dzikasanganiswa, inobata munhu mumwe chete pavanhu 70,000 .

Havasi vese vanorwara neschwannoma vane schwannomatosis. Mu schwannomatosis, kune multiple schwannomas inoumbwa. Kazhinji, schwannoma imwe chete inowanzoonekwa kupfuura multiple schwannomatosis. Izvi zvinoreva kuti hazviitiki kuvanhu vazhinji.

Ndezvipi zviratidzo zveSchwannomatosis?

Chiratidzo chikuru uye chinowanzoonekwa muchirwere ichi kurwadziwa . Kurwadziwa uku kunoitika nekuti bundu reschwannoma riri kudzvanya tsinga nenyama dzakapoteredza. Kurwadziwa uku kungave kwakaita sei?

• Inogona kuva kurwadziwa kusingaperi , zvichireva kuti inogona kugara kwemwedzi yakawanda, kunyange makore.
• Hunhu hwekurwadziwa hunogona kubva pahudiki kusvika pahunorema .
• Kurwadziwa uku kunogona kunzwikwa chero kupi mumuviri , kwete chete panzvimbo ine bundu. Dzimwe nguva, kurwadziwa uku kunogona kuitika panzvimbo isina chekuita nenzvimbo yebundu.
• Marwadzo anogona kuwedzera nekufamba kwenguva.

Fungidzira, une kurwadziwa kunogara kuchidzika negumbo rako, kuchiperekedzwa nekusanzwa. Hakuperi kunyangwe mushure mekutora mushonga. Ungafunga kuti ingori dzihwa. Asi kungave kurwadziwa kunokonzerwa neSchwannomatosis.

Pamusoro pekurwadziwa, zvimwe zviratidzo zvinogona kuitika zvichienderana nenzvimbo yebundu. Semuenzaniso:

• Kunzwa kukwenya kana kunzwa sekunge munhu abatwa nemagetsi .
• Kushaya simba kwetsandanyama kana kusashanda zvakanaka kwetsandanyama.
• Mapundu kana kuzvimba pasi peganda (kwakaumbwa mabundu) zvinogona kunzwikwa muruoko.

Kunyangwe zviratidzo izvi zvichiwanzotanga mushure memakore makumi maviri uye vasati vasvika makore makumi mana , zvidzidzo zvinoratidza kuti zvinogona kuonekwa chero pazera ripi zvaro.

Chii chinokonzera Schwannomatosis?

Chikonzero chikuru cheSchwannomatosis imhando yemajini (mutation). Izvi zvinonyanya kuitika kumajini anonzi NF2, SMARCB1, kana LZTR1. Majini aya ari pachromosome 22 .

Majini aya anoshanda se'bundu rinodzvinyirira', iro rinodzora kuumbwa kwebundu mumiviri yedu. Kureva kuti, majini aya anodzora kuti masero anofanira kukura nekupatsanurwa kangani. Saka, kana paine 'mutation' mujini re'bundu rinodzvinyirira' rakadai, masero edu haagamuchire mirairo yaanoda kudzora kukura kwemasero. Nekuda kweizvozvo, masero anotanga kukura nekupatsanurwa nekukurumidza, pasina kudzora. Ndizvo zvinoita 'bundu' iri.

Mune dzimwe nguva Schwannomatosis, chikonzero chaicho chingasazivikanwe. Izvi zvinoreva kuti chirwere ichi chinogona kuitika kunyangwe pasina kushanduka kwemajini kwakaonekwa parizvino.

Izvi zvinogara nhaka here? ('Schwannomatosis inogara nhaka here?')

Dzimwe nyaya dze 'Schwannomatosis'Inogona kugarwa nhaka . Zvichitaurwa zviri nyore, pakati pe15% ne25% yevanhu vane Schwannomatosis vane nhoroondo yemhuri yechirwere ichi. Chinotapuriranwa nenzira inotonga yega yega. Zvichitaurwa zviri nyore, kana mumwe wevabereki akagara nhaka kopi yejini rine shanduko yemajini, mwana anogona kunge aine chirwere ichi.

Zvisinei, zviitiko zvakawanda zveSchwannomatosis zvinoitika zvisina tsarukano . Izvi zvinoreva kuti mumwe munhu anogona kuwana Schwannomatosis nekugadzira iyi genetic mutation, kunyangwe pasina munhu mumhuri akambova nechirwere ichi.

Ndezvipi zvinetso zvinogona kuitika zveSchwannomatosis?

Mazhinji emamota eSchwannoma mamota asina kenza, asina njodzi (mamota asina njodzi). Izvi zvinoreva kuti haasi kenza. Zvisinei, kashoma, mamwe mamota anogona kuita kenza. Ndosaka vanachiremba vari kutarisisa izvi zvakare.

Imwe nyaya huru ndeyekurwadziwa kusingaperi . Kurwadziwa uku kunoramba kuripo kunogona kukanganisa hutano hwepfungwa dzemunhu. Kana zvikaoma kuita mabasa ezuva nezuva uye kana vasingakwanise kuzviita ivo pachavo, mamiriro akadai sekuora mwoyo nekuzvidya mwoyo anogona kumuka. Nokudaro, vanhu vazhinji vanoona zvichibatsira kutaura nemupi wezano wehutano hwepfungwa mumamiriro ezvinhu akadaro.

Schwannomatosis inoonekwa sei?

Chiremba achaongorora chirwere ichi nekukuongororwa kwemuviri . Panguva yekuongororwa, chiremba achakubvunza nezvezviratidzo zvako, kuti zvagara kwenguva yakareba sei zviripo, uye kana paine mumwe munhu mumhuri mako akambova nematambudziko akafanana.

Nekuti zviratidzo zveschwannomatosis zvakafanana nezvezvimwe zvirwere uye zvinogona kuoma kuziva kuti marwadzo ari kubva kupi, dzimwe nguva zvinogona kuoma kuona chirwere nekukasika. Zvisinei, nekuti vanachiremba vava kushandisa nzira dzekuongorora dzakagadziriswa, zviri nyore kuona mhando dzeschwannomatosis. Semuenzaniso, kuti ubatwe neschwannomatosis ine chekuita neSMARCB1, unofanirwa kunge uine chimwe chezvinotevera:

• Panofanira kunge paine kanenge schwannoma imwe chete, uye bvunzo yemajini uchishandisa ropa kana mate inofanira kusimbisa kuti pane shanduko mujini reSMARCB1.
• Panofanira kunge paine kanenge ka2 kanonzi schwannomas, uye biopsy yerimwe remabundu inofanira kusimbisa kuti rine SMARCB1 genetic mutation.

Ndezvipi zviedzo zvinoshandiswa kuongorora chirwere cheSchwannomatosis?

Kuongororwa kwemifananidzo kwakadai seMRI (Magnetic Resonance Imaging) kunogona kubatsira chiremba wako kuwana schwannoma. Kana bundu rikawanikwa pabvunzo iyi, chiremba wako anogona kutora sampuli diki yebundu kuti riongororwe (biopsy).Unogona kuiraira. Zvadaro, nekutarisa masero uchishandisa maikorosikopu, unogona kuziva chaizvo kuti ibundu rerudzii. Pamusoro pezvo, kuongororwa kweropa remajini kunogonawo kuona kana uine shanduko yemajini inokonzera rudzi rumwe nerumwe.

Schwannomatosis inorapwa sei?

Kutaura chokwadi, pari zvino hapana mushonga weSchwannomatosis, saka chinangwa chikuru chekurapa ndechekugadzirisa zviratidzo .

Chiremba wako anogona kukupa mishonga yakasiyana-siyana yekubatsira kuderedza marwadzo ako . Mishonga iyi inoenderana nezvinhu zvakaita senzvimbo yawarwadziwa uye kuti yakanyanya sei.

Kana marwadzo asingadzoreki nemishonga, kana kuti marwadzo acho akanyanya kuoma, chiremba wako anogona kufunga nezvekubviswa kweschwannoma kana kuendeswa kune miedzo yekiriniki . Zvisinei, chiremba wako ndiye achasarudza kana idzi dziri sarudzo dzakachengeteka kwauri. Kuvhiyiwa kunogona kukonzera kukuvara kwetsinga, uye pane mukana wekuti bundu rinogona kukura zvakare mushure mekubviswa.

Chii chingave chiri fungidziro yechirwere cheSchwannomatosis?

Izvi zvinosiyana kubva pamunhu nemunhu . Zvinoenderana nehukuru, huwandu, uye nzvimbo yemabundu eschwannoma mumuviri wako. Vamwe vanhu vanogona kunge vaine mashoma, nepo vamwe vangave akawanda. Anogona kunge ari panzvimbo imwe chete pamuviri, kana kuti anogona kunge akapararira munzvimbo dzakawanda. Saka zviratidzo hazvifanani kune wese munhu.

Chiratidzo chinonyanya kushungurudza cheSchwannomatosis kurwadziwa kusingaperi . Kurarama nekurwadziwa, kunyanya kana kwakanyanya, kunogona kuva dambudziko guru. Kurwadziwa uku kunogona kukanganisa hutano hwepfungwa nehwemuviri. Kana zviratidzo zveSchwannomatosis zviri kukuita kuti unzwe kuora mwoyo kana kusakwanisa kushanda muhupenyu hwako hwega kana hwemagariro evanhu, iva nechokwadi chekutaura nachiremba. Kutaura nenyanzvi yezvehutano hwepfungwa kunogonawo kubatsira.

Kune mishonga inobatsira kudzora zviratidzo. Vanhu vazhinji vanowana zororo kubva pazviratidzo nekushandisa mishonga. Vamwe vangada kuvhiyiwa kuti vabvise cyst. Asi yeukai, pane mukana wekuti cyst ichakura zvakare mushure mekunge yabviswa.

Schwannomatosis inokanganisa hupenyu hwemunhu here?

Schwannomatosis haikanganisi zvakananga makore ekurarama . Zvisinei, kurwadziwa kusingaperi nezvimwe zviratidzo zvinokonzeresa zvinogona kukanganisa mararamiro ehupenyu. Kana uine chero zvinokunetsa nezveizvi, zvakanaka kutaura nachiremba wako zvakananga. Sezvo mamiriro emunhu wese akasiyana, iye chete ndiye anogona kukupa ruzivo rwechizvino-zvino nezvemamiriro ako ezvinhu.

Ndinofanira kuona chiremba rini?

Kurwadziwa kwausingakwanise kuwana chikonzero.Kana uine zviratidzo zvakaita sekushaya simba kwetsandanyama , iva nechokwadi chekuona chiremba. Zvakare, kana ukaona bundu idzva kana bundu chero kupi zvako mumuviri wako, zvakakosha kuriratidza kuna chiremba.

Kana uchitova neSchwannomatosis, zivisa chiremba wako kana ukaona shanduko muzviratidzo zvako, zvakaita sekurwadziwa kwakanyanya.

Mibvunzo ipi yandinofanira kubvunza chiremba wangu?

Kana ukaona chiremba wako, zvinobatsira kubvunza mibvunzo yakaita seiyi:

• Ndingaitei kuti ndigadzirise marwadzo?
• Pane dzimwe nzira here kunze kwemishonga inoderedza marwadzo?
• Ndichada kuvhiyiwa here?
• Ndezvipi migumisiro yekurapwa?
• Vana vangu vanogona kugara nhaka chirwere ichi mune ramangwana here?

Pakupedzisira, zvinhu zvekurangarira (Mharidzo Yekuenda Kumba)

Kurarama nekurwadziwa kusingaperi kunouya neSchwannomatosis kunogona kuoma chaizvo. Mamwe mazuva ari nyore kupfuura mamwe. Kunyangwe uine zvirongwa, kurwadziwa kunogona kukumanikidza kuti uzvinonotse wogara kumba kuti uzorore. Izvi zvinogona kukanganisa mabasa ako ega uye evamwe. Asi usarega Schwannomatosis ichitonga hupenyu hwako.

Chiremba anogona kukubatsira kuwana nzira yakanakisisa yekurapa zviratidzo zvako. Kana kurwadziwa kusingaperi kuri kukanganisa hutano hwako hwepfungwa, unogona zvakare kubatsirwa nekuona mupi wezano wehutano hwepfungwa . Kuvhiyiwa nemiedzo yekiriniki zvinogonawo kuva sarudzo. Saka, bvunza chiremba wako kuti chii chiripo kuti akubatsire kuramba uri pamberi pezviratidzo zveSchwannomatosis. Yeuka kuti hausi wega, uye kune vanachiremba nemapoka ekutsigira kuti vakubatsire parwendo urwu.

Schwannomatosis , neurofibromatosis, kurwadziwa kusingaperi, zvirwere zvemajini, NF2, SMARCB1, LZTR1, zvirwere zvetsinga