Kodi mukusangalala bwanji kuona mwana wanu watsopano akulowa m'banja lanu? Koma, tangoganizirani, ngati thupi lonse la mwana wanu linali lodzaza ndi khungu lokhuthala, lokhala ndi zikhadabo, komanso lokhala ndi zikhadabo atangobadwa? Kudabwa ndi mantha omwe kholo lililonse limakhala nawo akawona n'kovuta kufotokoza. Lero tikambirana za vuto limodzi losowa kwambiri komanso loopsa, Harlequin Ichthyosis. Musachite mantha mukamva izi. Masiku ano, ndi kupita patsogolo kwa sayansi ya zamankhwala, pali njira zambiri zothanirana ndi vutoli. Tiyeni tiphunzire zambiri za izi.
Mwachidule, kodi Harlequin Ichthyosis ndi chiyani?
Harlequin Ichthyosis ndi matenda oopsa kwambiri komanso oopsa kwambiri a pakhungu otchedwa Ichthyosis . Ichthyosis ndi matenda omwe amapezeka pakakhala vuto ndi momwe maselo athu a pakhungu amakulira ndi kufa. Mitundu ina ya Ichthyosis ndi yofatsa kwambiri ndipo imatha kuthetsedwa ndi chisamaliro chabwino cha khungu. Komabe, Harlequin Ichthyosis ndi matenda oopsa omwe amafunikira chithandizo chamankhwala chapafupi kuyambira kubadwa.
Uwu ndi matenda obadwa nawo . Izi zikutanthauza kuti amatengera kwa makolo kupita kwa ana. Matendawa ndi osowa kwambiri moti amakhudza mwana m'modzi yekha mwa ana 500,000. Komabe, ndi mankhwala apamwamba a masiku ano, ana obadwa ndi matendawa tsopano ali ndi mwayi wokhala ndi moyo mpaka atakula.
Kodi zizindikiro zazikulu za matendawa ndi ziti?
Zizindikiro za matendawa zimasiyana pang'ono malinga ndi msinkhu wa mwana. Zizindikiro za mwana wakhanda ndi za mwana wamkulu pang'ono zimasiyana. Tiyeni tifotokoze motere kuti timvetse bwino.
| Gulu la zaka | Zizindikiro zomwe zimawoneka kawirikawiri |
|---|---|
| Makanda obadwa kumene |
|
| Ana okalamba ndi akuluakulu |
Kodi vutoli limapweteka?
Inde, izi zitha kukhala zopweteka kwa mwana wakhanda. Taganizirani za ming'alu yakuya pakhungu, ululu wa khungu lomwe likutuluka. Chifukwa chake, madokotala ndi anamwino omwe ali mu chipinda chosamalira ana akhanda (NICU) amapatsa mwana mankhwala ochepetsa ululu (monga Paracetamol, Ibuprofen). Amayesa ululuwo poyang'anira kugunda kwa mtima wa mwana ndi kulira kwake, ndikuwonetsetsa kuti ali bwino momwe angathere .
Chifukwa chiyani izi zikuchitika? Chifukwa chake ndi chiyani?
Chifukwa chachikulu cha izi ndi kusintha kwa majini a ABCA12 . Tiyeni timvetse izi mosavuta.
Ganizirani za jini iyi ya ABCA12 ngati 'Delivery Service' yomwe imanyamula zinthu zofunika monga mafuta (lipids) kupita ku khungu lathu lakunja. Gawoli la mafuta ndi lomwe limasunga khungu lathu kukhala losinthasintha komanso lathanzi. Kwa munthu amene ali ndi vuto la Harlequin Ichthyosis, chifukwa cha vuto la jini iyi, 'Delivery Service' imeneyo sigwira ntchito bwino. Zotsatira zake, mafuta safika bwino ku maselo a khungu, ndipo maselo a khungu amaunjikana pamwamba pa wina ndi mnzake, ndikupanga gawo lolimba komanso lolimba.
Popeza kuti matendawa ndi matenda obadwa nawo m'majini, kuti mwana akhale ndi matendawa, ayenera kutengera kwa mayi ndi bambo.Jini losalongosoka ili liyenera kukhala lobadwa nalo. Ngati makolo onse awiri ali ndi jini losalongosoka (kutanthauza kuti alibe zizindikiro, koma ali ndi jini), pali mwayi wa 25% (mmodzi mwa anayi) kuti mwana wawo adzadwala matendawa.
Kodi madokotala amazindikira bwanji matendawa ndikuwachiza bwanji?
Kawirikawiri, madokotala amatha kuzindikira vutoli akangobadwa chifukwa cha mawonekedwe apadera a mwana. Komabe, kuyezetsa majini kumachitika kuti kutsimikizire izi. Ngakhale panthawi ya mimba, madokotala amatha kukayikira vutoli ngati awona zizindikiro monga kusintha kwa khungu kapena kutsegula pakamwa pa mwana pafupipafupi pa ultrasound scans. Ngati kuli kofunikira, amathanso kuzindikira vutoli msanga ndi mayeso apadera (monga amniocentesis) panthawi ya mimba.
Njira zochizira
Harlequin Ichthyosis si matenda ochiritsika kwathunthu, koma zizindikiro zake zimatha kuthetsedwa ndipo mwanayo akhoza kukhala ndi moyo wabwino komanso wautali.
Chithandizo chingagawidwe m'magawo awiri akuluakulu:
1. Chithandizo cha Ana Obadwa ndi Matenda Ovuta Kwambiri (NICU): Masabata oyamba a moyo wa mwana ndi omwe ali pachiwopsezo chachikulu. Chithandizo chomwe chimaperekedwa panthawiyi ndi chomwe chimapulumutsa moyo wa mwana.
2. Kusamalira kwa nthawi yayitali kunyumba: Kusamalira wodwala moyo wonse atabwerera kunyumba kuchokera ku NICU.
Tiyeni tiwone bwino za chithandizochi.
| Njira yochizira | Kufotokozera |
|---|---|
| Chithandizo cha NICU ( Neonatal Intensive Care Unit) | |
| Chithandizo cha Retinoid | Uwu ndi mankhwala omwe amaperekedwa pakamwa kapena kupakidwa pakhungu. Umathandiza kuti khungu lokhuthala lichotsedwe mwachangu komanso kuti khungu lomwe lili pansi pake lichiritse. Ichi chakhala chifukwa chachikulu chopulumutsira miyoyo ya ana awa posachedwapa. |
| Chisamaliro chakhungu | Mankhwala odzola ndi mafuta apadera amapakidwa nthawi zonse kuti asunge chinyezi pakhungu. Mankhwala oletsa mabakiteriya amapakidwa kuti ateteze majeremusi kuti asalowe kudzera m'ming'alu pakhungu. |
| Malo okhala ndi chinyezi | Chinyezi chomwe chili mu chosungiramo mwana chimakhala chokwera kwambiri. Izi zimachepetsa kuuma kwa khungu. |
| Zakudya ndi kuyamwitsa | Popeza sangayamwe mkaka, amapatsidwa zakudya zofunikira kudzera mu chubu chaching'ono chomwe chimayikidwa m'mimba mwake (chubu chodyetsera). |
| Kuyang'anira kwa nthawi yayitali kunyumba | |
| Kusamba pafupipafupi | Kusamba tsiku lililonse kumathandiza kufewetsa khungu ndikuchotsa zigawo zokhuthala za khungu lakufa. |
| Kupaka mafuta odzola nthawi zonse | Muyenera kugwiritsa ntchito mafuta odzola kapena mafuta enaake monga petroleum jelly m'thupi lanu lonse kangapo patsiku. Izi zithandiza kuti khungu lisaume kapena kusweka. |
| Kukumana ndi akatswiri | Ndikofunikira kukhala ndi ubale wapafupi ndi dokotala wa khungu . Komanso, muyenera kuwona akatswiri a maso, makutu, ndi mafupa nthawi zonse. |
| Chitetezo ku kutentha kwambiri | Popeza simungathe thukuta, thupi limatha kutentha kwambiri kutenthako. Chifukwa chake, muyenera kusamala ndi dzuwa ndi kutenthako. |
Chofunika kwambiri ndi chikondi, chisamaliro, ndi mphamvu zamaganizo za makolo ndi abale. Ulendo uwu ndi wovuta. Chifukwa chake, ndikofunikira kwambiri kupempha thandizo kwa madokotala, alangizi, ndi mabanja ena omwe ali ndi ana ngati awa.
Uthenga Wopita Nawo Kunyumba
- Harlequin Ichthyosis ndi matenda a pakhungu osowa kwambiri koma oopsa omwe amabadwa nawo. Si opatsirana.
- Matendawa akhoza kukhala pachiwopsezo chachikulu kwa mwana wakhanda, choncho ndikofunikira kulandira chithandizo m'chipinda chosamalira ana aang'ono (NICU) kwa milungu ingapo yoyambirira.
- Chifukwa cha mankhwala amakono, makamaka retinoid therapy , kuchuluka kwa ana awa omwe ali ndi matendawa kwawonjezeka kwambiri.
- Vutoli ndi la moyo wonse. Ndikofunikira kusamalira khungu nthawi zonse, kupereka zakudya zoyenera, komanso kutsatira malangizo a madokotala odziwa bwino ntchito.
- Ndi chisamaliro choyenera, anthu omwe ali ndi vutoli akhoza kukhala ndi moyo wautali, wabwino, komanso wopindulitsa.
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