Palibe ululu waukulu kwa mayi kapena bambo kuposa kuona mwana wawo akuipiraipira pang'onopang'ono pamaso pawo. Mwana amene anali kuthamangathamanga akusewera mwadzidzidzi amayamba kunjenjemera ndi vuto lofanana ndi khunyu, kapena kuona kuganiza kwake ndi kuphunzira kwake zikuchepa pang'onopang'ono, n'zovuta kufotokoza mantha ndi mantha omwe mumamva. Umenewo ndi matenda oopsa kwambiri komanso osowa kwambiri omwe tikambirane lero. Matendawa ndi Matenda a Alpers, kapena `(Matenda a Alpers)`.
Mwachidule, kodi matenda a Alpers ndi chiyani?
Matenda a Alpers ndi matenda osowa kwambiri omwe amakhudza mitochondria, omwe ndi magetsi ang'onoang'ono omwe amapatsa mphamvu maselo athu. Taganizirani ngati pali mabatire ambiri ang'onoang'ono mkati mwa selo iliyonse m'thupi lathu, ndipo mabatire amenewo ndi omwe amapatsa maselowo mphamvu zomwe amafunikira kuti agwire ntchito. Chomwe chimachitika mu matenda a Alpers ndichakuti mabatire awa, mitochondria, sagwira ntchito bwino.
Kutaya mphamvu kumeneku kumawononga ziwalo zitatu zofunika kwambiri m'thupi lathu.
1. Ubongo: Matenda a dementia angachitike chifukwa cha kulephera kugwira ntchito bwino kwa ubongo, zomwe zimapangitsa kuti munthu asamakumbukire bwino.
2. Chiwindi: Kugwira ntchito kwa chiwindi kumatha kuima kotheratu, zomwe zimapangitsa kuti chiwindi chilephere kugwira ntchito.
3. Minofu: Kugwidwa ndi khunyu kungachitike chifukwa cha ntchito yamagetsi yosazolowereka muubongo.
Zizindikiro za matendawa nthawi zambiri zimatha kuwoneka pa msinkhu uliwonse, kuyambira mwezi umodzi mpaka zaka 36. Komabe, nthawi zambiri zimawonekera paubwana, makamaka pakati pa zaka 2 ndi 4. Nthawi zina, matendawa amathanso kuwonekera ali aang'ono, ndiko kuti, pakati pa zaka 17 ndi 24. Mwatsoka, uwu ndi matenda oopsa kwambiri, ndipo nthawi zambiri amatha ndi imfa.
Matendawa amayamba chifukwa cha vuto la majini lomwe timatengera kuchokera pa kubadwa. Izi zikutanthauza kuti ngakhale mwana atakhala ndi majini a matendawa m'thupi lake akabadwa, zingatenge milungu, miyezi, kapena zaka kuti zizindikiro ziwonekere.
Matenda a Alpert amadziwika ndi mayina ena angapo:
- Matenda a Alpers-Huttenlocher
- Matenda a Alpers
- Kuchuluka kwa poliodystrophy ya ana obadwa kumene
Ndani amadwala matendawa? Kodi ndi ofala bwanji?
Aliyense amene amalandira jini lolakwika lomwe limayambitsa matenda a Alpers akhoza kutenga matendawa. Amakhudza amuna ndi akazi mofanana, mosasamala kanthu za jenda.
Koma musadandaule, iyi ndi matenda osowa kwambiri. Matendawa amapezeka pafupifupi munthu mmodzi pa anthu 100,000 aliwonse . Akuti matendawa amapezekanso kwambiri pakati pa anthu ochokera ku Northern Europe.
N’chifukwa chiyani matenda a Alper amachitika? Kodi chifukwa chake n’chiyani?
Chifukwa chachikulu cha izi ndi kusintha, kapena kusintha kwa majini otchedwa `POLG1` m'thupi lathu. Ichi ndi chinthu chomwe chimapatsiridwa kuchokera ku mibadwomibadwo.
Mwachidule, zili motere. Kuti mupange mwana, muyenera kutenga jini kuchokera kwa amayi anu ndi jini kuchokera kwa abambo anu. Kuti mupeze matenda a Alpers, mwanayo ayenera kulandira jini lolakwika la `POLG1` kuchokera kwa amayi ndi abambo onse. Ngakhale makolo onse awiri ali ndi jini lolakwika, sangakhale ndi zizindikiro. Koma ngati mwanayo alandira majini onse awiri olakwika kuchokera kwa onse awiri, mwanayo adzakhala ndi matenda a Alpers.
Monga tafotokozera kale, vuto ili mu jini ya `POLG1` limapangitsa kuti DNA yomwe ili mu mitochondria, malo osungira mphamvu m'maselo athu, isagwire ntchito bwino. Ichi ndichifukwa chake ziwalo zomwe zimafuna mphamvu zambiri, monga ubongo, chiwindi, ndi minofu, zimakhudzidwa kwambiri.
Ofufuza ena amakhulupirira kuti ngati chinthu china chokhudza chilengedwe, monga kachilombo, chingakhudze munthu amene amalandira majini olakwika amenewa, chingayambitsenso matendawa.
Kodi zizindikiro za matendawa ndi ziti?
Zizindikiro za matenda a Alpert zimatha kusiyana pakapita nthawi. Zingagawidwe m'magulu awiri: zizindikiro zoyambirira ndi zomwe zimawonekera matendawa akamakula.
Chizindikiro choyamba chomwe chimawoneka nthawi zambiri ndi khunyu losagwira ntchito, lomwe ndi lovuta kulithetsa ndi chithandizo.
Tiyeni timvetse bwino zizindikiro izi kuchokera pa tebulo ili m'munsimu.
| Mtundu wa chizindikiro | Zinthu zoti muwone |
|---|---|
| Zizindikiro zazikulu komanso zoyambirira |
|
| Zizindikiro zina zoyambirira | |
| Zizindikiro zomwe zimachitika pamene matendawa akupita patsogolo |
Kodi madokotala amazindikira bwanji matendawa?
Dokotala wanu nthawi zambiri amafufuza mosamala zizindikiro za mwana wanu, makamaka zizindikiro zitatu zazikulu zomwe takambirana kale : kuiwalaiwala, matenda a chiwindi, ndi khunyu .
Kuphatikiza apo, mayeso ena angapo amachitidwa kuti atsimikizire matendawa.
| Mayeso | Momwe mungachitire ndi zomwe muyenera kudziwa |
|---|---|
| Kusanthula kwa madzi a m'mimba | Kupopera kwa msana kumaphatikizapo kulowetsa singano yaying'ono kwambiri kumbuyo kwanu ndikuchotsa madzi ochepa omwe ali pafupi ndi ubongo wanu. Madzi awa amayesedwa kuti awone ngati pali zofooka zilizonse mu mankhwala enaake a muubongo. |
| Mayeso a EEG `(Electroencephalography)` | Ma plate ang'onoang'ono achitsulo (ma electrode) amamangiriridwa ku chigaza kuti ayesere momwe magetsi amagwirira ntchito muubongo. Kuyesa kwa EEG kungasonyeze kuti ntchito ya ubongo ya munthu amene ali ndi matenda a Alpers imachepa. |
| Kuyesa majini | Kuyezedwa magazi kumachitika ndipo kuyesedwa kwa majini kumachitika. Izi zitha kuzindikira molondola ngati pali kusintha kwa majini mu jini ya `POLG1`. |
| Kujambula kwa MRI `(Kujambula kwa Magnetic Resonance)` | Kujambula ubongo pogwiritsa ntchito MRI kungawonetse kuchuluka kwa imvi muubongo wa munthu amene ali ndi matenda a Alpers. |
Kodi pali mankhwala a izi?
Mwatsoka, palibe mankhwala omwe apezeka mpaka pano ochiza matenda a Alpert kapena kuletsa kupitirira kwa matendawa.
Komabe, pali njira zosiyanasiyana zothandizira zomwe zingathandize kuthana ndi zizindikiro, kuchepetsa kusasangalala, komanso kukonza moyo. Dokotala wanu angakulangizeni njira monga:
- Mankhwala oletsa khunyu: Mankhwala oletsa khunyu amaperekedwa kuti achepetse kugwidwa ndi khunyu.
- Zakudya zopatsa thanzi komanso madzi: Ngati mukuvutika kumeza chakudya, chubu (percutaneous endoscopic gastrostomy) chingalowe m'mimba mwanu kuti chipereke chakudya ndi madzi.
- Zakudya: Zakudya zochepa zamapuloteni, zakudya zazing'ono zomwe zimafunika pafupipafupi.
- Kuchiza thupi: Kuchita masewera olimbitsa thupi ndi mankhwala ochepetsa kuuma kwa minofu ndikulimbitsa minofu.
- Chithandizo cha ntchito: Kuphunzitsa kuchita ntchito za tsiku ndi tsiku payekha.
- Chithandizo cha kulankhula: Chimathandiza kuthana ndi mavuto olankhula.
- Mankhwala ochepetsa ululu ndi opumitsa minofu: Mankhwala amaperekedwa kuti achepetse ululu ndi kuuma kwa minofu.
- Chithandizo cha kupuma: Ngati kupuma kuli kovuta, kupuma kumathandizidwa ndi makina monga `CPAP` kapena `BiPAP®`, kapena ngati kuli kofunikira, ndi `(tracheostomy).`
Komanso, dokotala wanu adzachita mayeso osiyanasiyana a magazi (monga `Kuwerengera magazi kwathunthu - CBC`, `kuyesa ntchito ya chiwindi`) miyezi ingapo iliyonse kuti aziyang'anira momwe wodwalayo alili ndikusintha chithandizo ngati pakufunika kutero.
Ngati mukusamalira mwana wodwala...
Tikudziwa kuti ulendowu ndi wovuta kwambiri. Pamene matendawa akupitirira, inu ndi mwana wanu mungafunike thandizo lowonjezera. Pali akatswiri ambiri ndi mautumiki omwe angakuthandizeni paulendowu.
- Akatswiri: Mutha kupempha thandizo kwa akatswiri a matenda a m'mimba, akatswiri azakudya, ndi akatswiri a matenda amisala.
- Utumiki Wosamalira Ana Pakhomo: Ngati muli ndi matenda aakulu, ogwira ntchito yosamalira ana ophunzitsidwa bwino angaitanidwe kuti abwere kunyumba kwanu kudzasamalira mwana wanu.
- Magulu osamalira odwala ovutika maganizo: Maguluwa amathandiza kupereka chithandizo ndi mphamvu zamaganizo zofunika kuti mwana akhale womasuka komanso wopanda ululu panthawi yomaliza ya matendawa.
Kumbukirani, simuli nokha. Pali magulu othandizira makolo a ana omwe ali ndi matenda a Alpers ndi matenda ena a mitochondrial. Mutha kugawana zomwe mwakumana nazo, kugawana zinthu, ndikupeza upangiri womwe mukufuna.
Matenda a Alpert ndi matenda omwe amapitirira kukula omwe nthawi zambiri amapezeka pakati pa zaka 4 ndi 10 zizindikiro zitayamba.
Ngati mukudziwa kuti jini iyi imagwira ntchito m'banja mwanu ndipo mukuyembekezera mwana, ndikofunikira kwambiri kukumana ndi katswiri wa majini. Adzakupatsani upangiri ndi chithandizo chomwe mukufuna.
Uthenga Wopita Nawo Kunyumba
- Matenda a Alpers ndi matenda osowa kwambiri komanso oopsa omwe amakhudza mitochondria.
- Izi zimakhudza kwambiri ubongo, chiwindi, ndi minofu, ndipo zizindikiro zazikulu ndi khunyu, kulephera kwa chiwindi, komanso kulephera kukumbukira.
- Ngakhale kuti palibe mankhwala a matendawa, pali njira zambiri zothandizira kuthana ndi zizindikiro komanso kupereka chitonthozo kwa wodwalayo.
- Popeza ichi ndi vuto la majini, palibe njira yochepetsera chiopsezo. Ngati pali mbiri ya banja, uphungu wa majini ndi wofunika kwambiri.
- Kusamalira mwana wodwala ngati uyu ndi ntchito yovuta kwambiri, kotero kupeza thandizo kuchokera kwa madokotala, mautumiki a unamwino, ndi magulu othandizira kudzakuthandizani.
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