Kodi muli ndi ziphuphu zazing'ono zomwe zimapangika m'mbali zina za thupi lanu? Kapena mumamva pang'ono ndipo mukumva chizungulire? Ngakhale timaganiza kuti izi ndi zinthu zachilendo, nthawi zina kumbuyo kwa zinthuzi kungakhale matenda a majini omwe sitinamvepo zambiri. Lero tikambirana za matenda amodzi otere. Matendawa ndi Neurofibromatosis Type 2, kapena dzina lalifupi lomwe tonse tikudziwa ndi NF2 . Ngakhale izi ndi zovuta pang'ono, tiyeni timvetse mosavuta.
Mwachidule, kodi NF2 ndi chiyani?
NF2 ndi matenda a majini omwe amakhudza dongosolo lathu la mitsempha. Chifukwa cha kusintha kwa jini m'thupi lathu, thupi lathu limalandira chizindikiro cholakwika kuti lipange maselo ambiri. Maselo ochulukirapowa amasonkhana ndikupanga zotupa.
Chabwino kwambiri n'chakuti zotupa zambirizi sizimayambitsa khansa . Izi zikutanthauza kuti sizifalikira ku ziwalo zina za thupi. Komabe, kutengera komwe zotupazi zimayambira, tingakumane ndi mavuto osiyanasiyana.
Malo odziwika kwambiri komwe ziphuphuzi zingapangike ndi awa:
- Mitsempha m'thupi lathu lonse (mitsempha ya m'mphepete mwa thupi).
- Nembanemba pakati pa ubongo ndi chigaza (meninges).
- Msana.
- Mitsempha yomwe imagwirizanitsa ubongo ndi khutu lamkati, imathandiza kumva ndi kulinganiza bwino.
NF2 ndi matenda omwe ali m'gulu la matenda otchedwa `neurofibromatosis.` Gulu la matenda amenewa limakhudza kwambiri khungu lathu ndi dongosolo lathu la mitsempha.
Kodi matendawa ndi ofala bwanji?
Matendawa si ofala kwambiri. Malinga ndi ziwerengero, NF2 imakhudza pafupifupi mwana m'modzi mwa ana 33,000 obadwa padziko lonse lapansi. Pafupifupi 3% ya odwala onse omwe apezeka ndi matenda a neurofibromatosis ndi odwala a NF2.
Kodi zizindikiro za NF2 ndi ziti?
Zizindikiro za NF2 zimatha kusiyana malinga ndi munthu ndi munthu. Zimatengera komwe zotupazo zili m'thupi lanu komanso kukula kwake. Kwa anthu ambiri, zizindikiro zoyamba zimayambitsidwa ndi zotupa m'mitsempha yomwe imalamulira kumva.
Zizindikiro zoyamba zomwe nthawi zambiri zimawonekera ndi kusintha kwa masomphenya kapena kumva. Ngati mukukumana ndi vuto lotere, onetsetsani kuti mwawonana ndi dokotala.
Tebulo ili m'munsimu lingakuthandizeni kumvetsetsa bwino zizindikiro izi.
| Mtundu wa chizindikiro | Kufotokozera |
|---|---|
| Zizindikiro zoyambirira za zotupa za mitsempha ya kumva | |
| Mavuto a kusasinthasintha | Kumva chizungulire, kusatha kukhala bwino poyenda. |
| Kuvutika kumva | Kutaya pang'onopang'ono kumva m'khutu limodzi kapena onse awiri. |
| Kumva kulira m'makutu (tinnitus) | Kumva phokoso lolira m'makutu mosalekeza, ngakhale pamene palibe phokoso. |
| Zizindikiro zomwe zimayambitsidwa ndi zotupa za mitsempha ina | |
| Mutu | Mutu wopweteka pafupipafupi womwe sutha ndi mankhwala opha ululu wamba. |
| Kufooka kwa minofu kapena dzanzi | Kusanza kapena kumva ngati munthu alibe moyo m'malo monga manja, mapazi, kapena nkhope. |
| Kufooka kwa nkhope | Kulephera kulamulira mbali imodzi ya nkhope moyenera. |
| Kusintha kwa khungu | Kuoneka kwa timibulu kapena ma plaque pakhungu. |
| Mavuto a masomphenya | Kusawona bwino, maso ofooka. |
| Ululu | Kumva kutentha m'manja ndi m'mapazi. |
| Kugwidwa ndi khunyu | Kupezeka kwa zinthu zofanana ndi zakunja. |
Zizindikiro nthawi zambiri zimayamba kuonekera pakati pa zaka zaunyamata ndi zaka 30. Komabe, matendawa amatha kukhudza anthu azaka zilizonse. Akuluakulu amakhala ndi vuto la kumva poyamba. Komabe, ana amakhala ndi vuto la kutupa muubongo kapena msana. Zizindikiro zikayamba ali ana zikutanthauza kuti matendawa akhoza kukhala oopsa kwambiri.
Ndi mitundu yanji ya ziphuphu zomwe zimakula mu NF2?
Pali mitundu ikuluikulu ingapo ya timibulu tomwe timapezeka mu NF2. Tiyeni tiwone mwachidule.
| Mtundu wa Chotupa | Malo oyambira ndi chilengedwe |
|---|---|
| Schwannomas | Izi zimachokera ku maselo otchedwa maselo a Schwann. Amapezeka kwambiri mu mitsempha yomvera, yomwe imagwirizanitsa ubongo ndi khutu (yomwe imatchedwanso vestibular schwannomas ). Amathanso kukula mu mitsempha yomwe imathandiza pazinthu monga kuyenda kwa maso, kuyenda kwa lilime, komanso kumeza. |
| Meningiomas | Izi ndi mtundu wa chotupa chomwe chimapanga mu ubongo. Makamaka, chimapangika mu nembanemba (meninges) pakati pa ubongo ndi chigaza. |
| Gliomas | Uwu ndi mtundu wa chotupa chomwe chimapangika muubongo. Izi zimapangidwa kuchokera ku maselo otchedwa glial cells. Nthawi zambiri amapezeka mozungulira mitsempha ya maso. |
| Ependymomas | Uwu ndi mtundu wa glioma. Umakula mu ubongo ndi msana. Umatuluka m'maselo omwe amapanga madzi mkati mwa ubongo (cerebrospinal fluid - CSF). |
N’chifukwa chiyani NF2 imayamba? Kodi chifukwa chake n’chiyani?
Chifukwa chachikulu cha izi ndi kusintha kwa majini mu jini `NF2` m'thupi lathu. Jini iyi imathandiza kupanga puloteni yotchedwa `merlin`. Ntchito yayikulu ya puloteni iyi ndikuletsa kupangika kwa zotupa (chotupa-choletsa).
Choncho, pakachitika kusintha kwa majini a `NF2`, puloteni ya `merlin` siipangidwa bwino. Kenako maselo ena m'thupi lathu amayamba kugawikana ndikuchulukana mosalamulirika. Umu ndi momwe maselo ochulukirapo amasonkhanira ndikupanga zotupa.
Tikhoza kupeza kusiyana kwa majini m'njira ziwiri:
1. Cholowa: Ngati m'modzi mwa makolo ali ndi kusintha kwa majini kumeneku, pali mwayi wa 50% kuti mwana adzalandira (pattern ya `autosomal dominant`).
2. Mwachisawawa: Nthawi zina, ngakhale palibe m'banjamo amene ali ndi matendawa, kusintha kwa majini atsopano kungachitike mwachisawawa panthawi yoyembekezera. Umu ndi momwe odwala ambiri a NF2 amakulira matendawa.
Ndani ali pachiwopsezo? Kodi ndi mavuto otani omwe angakhalepo?
Ngati wina m'banja mwanu, makamaka makolo anu, ali ndi NF2, inunso muli pachiwopsezo chotenga matendawa.
Pali mavuto angapo omwe angachitike chifukwa cha NF2.
- Kutaya kwathunthu kumva.
- Kutaya kwathunthu kwa masomphenya.
- Kuwonongeka kwa mitsempha.
- Kuchulukana kwa madzi muubongo.
Kawirikawiri, timibulu ta NF2 timakhala khansa, choncho kupita kuchipatala nthawi zonse n’kofunika kwambiri.
Kodi mungazindikire bwanji matendawa?
Dokotala adzakuyang'anirani ndikukuyesani mayeso osiyanasiyana kuti atsimikizire ngati muli ndi matendawa kapena ayi. Choyamba, adzakuyesani thupi. Adzayang'ana zinthu monga kusintha kwa khungu lanu ndi momwe thupi lanu lilili. Kenako adzakufunsani za zizindikiro zanu komanso mbiri ya matenda a m'banja lanu.
Kuphatikiza apo, mayeso otsatirawa akhoza kuchitidwa:
- Kujambula kwa MRI: Izi zingathandize kuona bwino ngati pali zotupa zilizonse mu dongosolo lanu la mitsempha ndi pakhungu.
- Kuyesa kumva: Yang'anani mulingo wa kumva kwanu.
- Kuyezetsa maso: Yang'anani ngati muli ndi ma cataract kapena mavuto ena a maso.
- Kuyesa majini: Yang'anani kusintha kwa majini mu jini ya `NF2`.
Kodi mankhwala a NF2 ndi ati?
Ndipotu, palibe mankhwala a NF2 pakadali pano. Komabe, matenda ndi chithandizo cha matendawa zapita patsogolo kwambiri. Mankhwalawa amathandiza kuchepetsa zizindikiro ndikukuthandizani kukhala ndi moyo wabwinobwino momwe mungathere. Mankhwalawa amasiyana malinga ndi munthu aliyense. Dokotala wanu adzasankha chithandizo chomwe chili chabwino kwa inu.
| Njira yochizira | Kodi chikuchitika ndi chiyani? |
|---|---|
| Opaleshoni | Opaleshoni imachitika kuti ichotse ziphuphu kapena ma cataract. |
| Chemotherapy kapena chithandizo cha radiation | Mankhwalawa amagwiritsidwa ntchito kuchepetsa kukula kwa zotupa. Mwachitsanzo, stereotactic radiotherapy ndi chithandizo cha radiation. |
| Zipangizo zothandizira kumva | Zipangizo monga zothandizira kumva, zoyikamo ma cochlear, ndi zoyikamo ma underground brainstem zimagwiritsidwa ntchito kusunga ndikuwongolera kumva. |
| Zothandizira kuwona | Zipangizo monga magalasi zimaperekedwa kwa anthu omwe ali ndi vuto la kuona. |
| Zothandizira kuyenda | Ngati kuyenda kuli kovuta chifukwa cha kuwonongeka kwa mitsempha, zipangizo zoyendera zimaperekedwa. |
| Mankhwala | Mankhwala osiyanasiyana amaperekedwa kuti achepetse zizindikiro monga ululu. |
Nthawi zina, ngati zotupa zanu sizikukuvutitsani kwambiri, dokotala wanu angasankhe kuziyang'anira popanda kuzichiza. Komabe, ndikofunikira kuti mufufuze thupi, mufufuze, ndikuyezetsa kumva ndi maso osachepera kamodzi pachaka kuti muwone momwe matendawa akuyendera.
Gulu lachipatala lomwe likuchita izi
Popeza NF2 ndi matenda omwe amakhudza ziwalo zosiyanasiyana za thupi, amachiritsidwa ndi gulu la akatswiri. Gululi nthawi zambiri limaphatikizapo:
- Madokotala a khansa ya m'mitsempha: Madokotala omwe ndi akatswiri pa khansa ndi zotupa za mitsempha.
- Madokotala a opaleshoni ya mitsempha: Madokotala ochita opaleshoni omwe ndi akatswiri mu dongosolo la mitsempha.
- Madokotala a ENT: Madokotala a makutu, mphuno, ndi pakhosi.
- Akatswiri a zakumva: Akatswiri a zakumva.
- Alangizi a majini: Akatswiri omwe amapereka uphungu pa matenda a majini.
Kodi pali zotsatirapo zilizonse za mankhwalawa?
Inde, monga chithandizo chilichonse, mankhwala awa akhoza kukhala ndi zotsatirapo zake. Amasiyana malinga ndi mtundu wa chithandizo.
Pali zoopsa zina zomwe zimachitika pa opaleshoni yochotsa zotupa. Chifukwa chakuti zotupazi zimapezeka m'malo ovuta kwambiri monga ubongo ndi msana, pali zoopsa monga kutuluka magazi, matenda, ndi kuwonongeka kwa mitsempha. Koma gulu lanu la opaleshoni lidzachita zonse zomwe lingathe kuti lichepetse zoopsazi.
Mu chemotherapy ndi radiation therapy,
- Kudzimbidwa
- Kutsegula m'mimba
- Kutopa
- Kutaya tsitsi
- Chilakolako cha chakudya
- Kusanza ndi kusanza
Zotsatirapo zake monga: Musanayambe kulandira chithandizo, lankhulani ndi dokotala wanu za zotsatirapo zake.
Kodi munganene chiyani za moyo wa munthu ndi matendawa?
Mmene NF2 imakhudzira moyo wa munthu zimadalira zinthu zambiri. Kukula kwa zilonda, komwe zili, ndi zaka zomwe matendawa amayamba kupezeka ndi zina mwa zofunika kwambiri. Nthawi zina zilonda sizingayambitse zizindikiro zilizonse. Nthawi zina, zizindikiro zimatha kukhala zoopsa kwambiri.
Chinthu chabwino kwambiri ndikupeza matendawa msanga ndikuyamba kulandira chithandizo mavuto asanayambe . Kenako chiyembekezo chimakhala bwino kwambiri. Kutengera ndi momwe zizindikiro zanu zimakukhudzirani, dokotala wanu adzatha kukupatsani chidziwitso cholondola.
Kodi NF2 ingapewedwe?
Ayi. Popeza NF2 ndi matenda a majini, sangathe kupewedwa. Komabe, ngati pali mbiri ya banja la matendawa ndipo mukukonzekera kuyambitsa banja, upangiri wa majini umalimbikitsidwa musanayambe kukhala ndi mwana.Ndikofunikira kwambiri kutchula izi: Kuti mumvetse bwino za chiopsezo cha mwana wanu kudwala matendawa.
Uthenga Wopita Nawo Kunyumba
- NF2 ndi matenda a majini omwe amayambitsa zotupa m'mitsempha. Zotupa zambirizi si khansa.
- Zizindikiro monga kulephera kumva, mavuto a thanzi, kusintha kwa masomphenya, ziphuphu pakhungu, ndi mutu ndizofala.
- Ngakhale kuti matendawa sangachiritsidwe kwathunthu, pali njira zambiri zochizira zomwe zingathandize kuchepetsa zizindikiro ndikukweza moyo.
- Ndikofunikira kwambiri kuzindikira matendawa msanga ndikupita kukayezetsa nthawi zonse pansi pa gulu la madokotala apadera.
- Ngati banja lanu lili ndi mbiri ya matenda amenewa, ganizirani kufunafuna uphungu wa majini musanayambe kukhala ndi ana.











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