Ndikumvetsa momwe mumamvera chisoni, kudabwitsidwa, komanso kufooka mukazindikira kuti mwana wanu ali ndi vuto losowa lotchedwa Wolf-Hirschhorn syndrome. Mwadzidzidzi mungakhale ndi mafunso ambiri m'maganizo mwanu, monga, 'N'chifukwa chiyani izi zachitikira mwana wanga?', 'Zinachitika bwanji?', 'Ndichite chiyani tsopano?' Musaganize kuti muli nokha panthawiyi. Tiyeni tikambirane zonse momveka bwino komanso mosavuta.
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Kodi matenda a Wolf-Hirschhorn ndi chiyani kwenikweni?
Mwachidule, matenda a Wolf-Hirschhorn ndi matenda osowa kwambiri omwe mwana amabadwa nawo. Amatchedwanso (4p- syndrome). Maselo athu ali ndi chinthu chotchedwa ma chromosome . Taganizirani izi ngati mabuku omwe ali ndi ndondomeko yonse ya momwe thupi lathu liyenera kupangidwira. Pali ma chromosome 46, m'magulu 23.
Mu matenda a Wolf-Hirschhorn, kachidutswa kakang'ono kwambiri ka chromosome 4 kakusowa. Zili ngati kachidutswa kakang'ono ka tsamba mu pulani kakung'ambika pakona. Ngakhale kachidutswa kakang'ono ka chromosome kangasokoneze kukula kwabwinobwino kwa mwana. Mtundu ndi kuopsa kwa zizindikiro zimasiyana malinga ndi mwana, kutengera kukula kwa kachidutswa komwe kakusowa.
Kodi chifukwa chake ndi chiyani? Kodi ichi ndi chifukwa cha makolo?
Funso limene makolo ambiri amafunsa ndi ili. Chofunika kwambiri chomwe muyenera kumvetsetsa apa ndichakuti nthawi zambiri, ichi sichinthu chochokera kwa makolo, kapena chomwe makolo ali nacho cholakwika.
Kusweka kwa chromosome kumeneku nthawi zambiri kumachitika mwangozi panthawi yogawa maselo mwana akangobadwa m'mimba. Madokotala sakudziwabe chifukwa chake kusintha kwadzidzidzi kwa majini kumeneku kumachitika.
Komabe, nthawi zina, vutoli likhoza kutengera kwa kholo limodzi. Izi zimatchedwa 'balanced translocation' . Izi zikutanthauza kuti ma chromosome awiri kapena kuposerapo mwa mayi kapena bambo asweka ndikusintha malo awo panthawi ya kukula kwawo. Koma chifukwa chakuti ali ndi balanced, mayi kapena bambo sasonyeza zizindikiro zilizonse. Komabe, munthu wotere akakhala ndi mwana, pali mwayi waukulu kuti chromosome yosalinganika iperekedwe kwa mwanayo. Ngati mukufuna, mutha kuyesedwa majini kuti muwone ngati inu kapena mnzanu muli ndi vuto la 'balanced translocation'. Lankhulani ndi dokotala wanu kuti mudziwe zambiri za izi.
Kodi zizindikiro zomwe zingawonekere mwa mwana ndi ziti?
Matenda a Wolf-Hirschhorn amatha kukhudza ziwalo zosiyanasiyana za thupi. Ichi ndichifukwa chake pali zizindikiro zambiri. Si mwana aliyense amene ali ndi zizindikiro zonsezi. Zizindikiro zazikulu ndi mawonekedwe apadera a nkhope, kuchedwa kukula, kulephera kwa nzeru, ndi khunyu.
Tiyeni tiwone zizindikiro izi momveka bwino patebulo.
| Gawo lomwe lakhudzidwa | Zinthu zodziwika bwino zomwe zawonedwa |
|---|---|
| Mawonekedwe a nkhope |
|
| Kukula ndi thupi | |
| Dongosolo la mitsempha ndi luntha | |
| Ziwalo zamkati |
Kodi mungazindikire bwanji vutoli?
Nthawi zina, dokotala wanu angakayikire vutoli kutengera mawonekedwe ena a thupi la mwana wanu omwe amawonedwa panthawi yowunikira nthawi zonse ya ultrasound panthawi ya mimba. Komanso, mayeso ena apadera a magazi (kuyezetsa DNA popanda maselo) omwe alipo tsopano angapereke chidziwitso chokhudza mavuto a chromosome.
Koma kumbukirani, izi ndi zoyezetsa chabe. Sizikutsimikizika 100% kuti mwana ali ndi vutoli chifukwa cha chidziwitso.
Kuti atsimikizire matenda enieni, mayeso enieni a majini amafunika. Pakati pawo, chofunikira kwambiri ndi mayeso a fluorescence in situ hybridization (FISH) . Izi zitha kuzindikira kutayika kwa gawo la chromosome yachinayi ndi kulondola kopitilira 95%. Mayesowa amatha kuchitika mwana asanabadwe kapena atabadwa.
Ngati mwana wanu watsimikizika kuti ali ndi matenda a Wolf-Hirschhorn, dokotala wanu angakulangizeni kuti muyesedwenso zina, monga kusanthula, kuti mudziwe bwino mbali zina za thupi zomwe zakhudzidwa.
Kodi chimachiritsidwa bwanji?
Mungamve chisoni kumva izi, koma zoona zake n'zakuti palibe mankhwala omwe apezeka omwe angachiritse matenda a Wolf-Hirschhorn kwathunthu.
Koma sizikutanthauza kuti palibe chomwe tingachite. Cholinga chachikulu cha chithandizo ndikuwongolera zizindikiro za mwana ndikuwathandiza kukhala ndi moyo wabwino kwambiri.
Popeza mwana aliyense ndi wosiyana, dongosolo la chithandizo limasiyana malinga ndi mwana. Nthawi zambiri, dongosolo la chithandizoli limakhala ndi izi:
| Njira yochizira | Cholinga |
|---|---|
| Kuchiza Thupi ndi Kuchiza Pantchito | Kulimbitsa minofu, kuwonjezera kuyenda, ndikuphunzitsa kuchita ntchito za tsiku ndi tsiku paokha. |
| Chithandizo cha Mankhwala | Kupereka mankhwala, makamaka kuti achepetse khunyu. |
| Opaleshoni | Kukonza opaleshoni ya zilema zobadwa nazo monga matenda a mtima kapena ubongo. |
| Maphunziro Apadera | Kupereka maphunziro oyenerera luso la mwana lophunzira. |
| Uphungu wa Majini | Kuthandiza achibale kumvetsetsa za vutoli komanso kukambirana za zoopsa zomwe zingachitike polera ana mtsogolo. |
Kusamalira mwana uyu ndi ntchito yaikulu ya gulu. Kumafuna thandizo la anthu ambiri, kuphatikizapo madokotala a ana, akatswiri a physiotherapy, ndi akatswiri olankhula.
Uthenga Wopita Nawo Kunyumba
- Matenda a Wolf-Hirschhorn ndi matenda osowa kwambiri omwe amapezeka m'majini. Nthawi zambiri amayamba chifukwa cha makolo awo.
- Zizindikiro ndi kuopsa kwa mwana aliyense zimasiyana.
- Ngakhale kuti vutoli silingathe kuchiritsidwa kwathunthu, pali njira zambiri zochiritsira zizindikirozo ndikupatsa mwana moyo wabwino.
- Pachifukwa ichi, thandizo la gulu la madokotala ndi akatswiri azachipatala ndilofunika kwambiri.
- Kusamalira mwana ngati uyu ndi vuto lalikulu. Monga kholo, ndikofunikira kuti muzisamalira thanzi lanu la maganizo ndikupeza chithandizo chomwe mukufuna.
- Ngati muli ndi mafunso kapena nkhawa zokhudza matenda a mwana wanu, lankhulani momasuka ndi dokotala wanu.
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