Monga kholo, mwina nthawi zonse mumaganizira za thanzi ndi chitukuko cha mwana wanu. Nthawi zina, timakumana ndi matenda osowa kwambiri omwe sitimva zambiri za iwo. Chimodzi mwa matenda osowa koma ofunikira kwambiri a majini ndi Cornelia de Lange Syndrome, kapena (CdLS) mwachidule. Tisanayambe kuchita mantha ndi izi, tiyeni tikambirane mwachidule komanso momveka bwino ndikumvetsetsa zomwe zili.
BMI Calculator
Know your body mass index (BMI) and weight classification
Kodi matenda a Cornelia de Lan (CdLS) ndi chiyani kwenikweni?
Mwachidule, (CdLS) ndi matenda osowa kwambiri a majini omwe amapezeka pobadwa. Amatha kukhudza ziwalo zingapo za thupi la mwana. Kunena zoona, amayamba chifukwa cha kusintha ) kwa majini angapo okhudzana ndi kukula kwa thupi lathu.
Vutoli likhoza kuwoneka m'njira ziwiri zazikulu. Limodzi ndi lofatsa , ndipo linalo ndi lodziwika bwino . Nthawi zambiri, tikamalankhula za matendawa, timakhala tikulankhula za lodziwika bwino. Komabe, ana omwe ali ndi lodziwika bwino amathanso kusonyeza zizindikiro zomwezi, koma pang'ono.
Makanda omwe ali ndi CdLS nthawi zambiri amabadwa ali ndi kulemera kochepa komanso kukula kochepa. Mutu wawo ukhozanso kukhala wocheperako kuposa wa mwana wamba. M'mawu azachipatala, izi zimatchedwa microcephaly . Kuwonjezera pa kusinthaku kwakuthupi, pakhoza kukhala zovuta zina zamaganizo ndi zamakhalidwe. Ana ena amathanso kuchedwa kulankhula.
Kodi zizindikiro za vutoli ndi ziti?
Zizindikiro za CdLS zitha kuoneka mwana asanabadwe kapena atabadwa. Pali zinthu zina zomwe zimachitika kawirikawiri m'mawonekedwe a ana omwe ali ndi vutoli. Amathanso kuwona mavuto okhudzana ndi kugaya chakudya komanso kukula kwa nzeru. Tiyeni tiwone izi patebulo.
| Mtundu wa khalidwe | Zinthu zoti muwone |
|---|---|
| Makhalidwe akuluakulu akuthupi | |
| Mutu ndi nkhope | - Mutu wocheperako kuposa wamba (Microcephaly) - Nsidze zazitali - Nsidze zopapatiza, zopyapyala kapena zokhuthala - Tsitsi lotsika - Mphuno yozungulira, yaifupi - Milomo yowonda komanso yopindika - Mano ndi maso omwe ali kutali kwambiri |
| Ziwalo zina za thupi | - Tsitsi la thupi limakula kwambiri - Mavuto ndi kukula kwa manja ndi miyendo - Zilema za mtima - Mkamwa wosweka - Cryptorchidism (ma testicles osatambasuka mwa anyamata) |
| Mavuto a m'mimba | |
| Mavuto ofala | - Kudzimbidwa - Kutsegula m'mimba - Kusanza - Kudzaza mimba - Kusowa chilakolako nthawi zina - Kubwerera m'mimba kwa asidi m'mimba (GERD) |
| Mavuto amisala ndi makhalidwe | |
| Khalidwe ndi chitukuko | - Kuchedwa kwa chitukuko - Zovuta pakuphunzira - Mavuto a khalidwe - Matenda Osakhazikika Maganizo (ADHD) - Nkhawa - Matenda a Autism (Autism) |
Kuphatikiza apo, ana ena amathanso kukhala ndi vuto la kumva ndi kuona (monga myopia).
Clinical vitamins and nutritional supplements
Clinically proven high quality vitamins, minerals and immune nutritional supplements.
Check Availability →Kodi izi zimayambitsa chiyani? Kodi ndi zachibadwa?
CdLS ndi matenda omwe angakhudze aliyense, mosasamala kanthu za mtundu kapena jenda. Nthawi zambiri, amayamba chifukwa cha kusintha kwa majini komwe kumachitika mwadzidzidzi ndipo sikunawonekepo m'banjamo.
Pakadali pano, majini pafupifupi 7 apezeka omwe amayambitsa matenda a CdLS. Mwana amene ali ndi vutoli akhoza kusintha majini amodzi kapena angapo mwa awa. Mtundu ndi kuopsa kwa matendawa zimadalira jini yomwe kusintha kwa majini kumachitika komanso momwe amachitira. Mwachitsanzo, ana omwe ali ndi kusintha kwa majini (NIPBL) akhoza kukhala ndi zizindikiro zoopsa kwambiri.
Chofunika kwambiri ndichakuti ngati mwana m'modzi m'banjamo ali ndi CdLS, mwayi woti mwana wotsatira akhale ndi matendawa ndi wochepa kwambiri (pafupifupi 1-2%).
Komabe, nthawi zina, ngati kholo limodzi lili ndi vuto la CdLS, pali mwayi wa 50% kuti mwana adzalandira. Izi zimatchedwa cholowa cha (Autosomal dominant).
Kodi mungazindikire bwanji matendawa?
Ngati mukuganiza kuti mwana wanu ali ndi zizindikiro izi, choyamba muyenera kupita kwa dokotala wa ana .
Dokotala adzayamba kaye wafufuza bwino mwanayo ndikukufunsani za mbiri ya matenda a mwana wanu ndi banja lake. Adzafufuza makamaka zizindikiro ndi zizindikiro zakuthupi zokhudzana ndi CdLS.
Kenako, kuyezetsa majini kungalimbikitsidwe kuti kutsimikizire matendawa. Izi makamaka zimayang'ana kusintha kwa majini awa:
- NIPBL
- SMC1A
- RAD21
- SMC3
- HDAC8
Pa nthawi ya mimba, ultrasound scan pakati pa masabata 18-20 nthawi zina imatha kuzindikira zolakwika pankhope kapena miyendo ya mwana. Izi zingapereke zizindikiro zina zokhudza CdLS.
Kodi imachiritsidwa bwanji?
Ndikofunikira kudziwa izi: Palibe mankhwala enieni omwe angachiritse CdLS kwathunthu. Komabe, sizikutanthauza kuti palibe chomwe tingachite. Cholinga chachikulu cha chithandizo ndikuwongolera zizindikiro za mwana ndikumuthandiza kukhala ndi moyo wathanzi komanso wachimwemwe momwe tingathere.
Dokotala mmodzi sakwanira pa izi. Gulu la akatswiri ndi akatswiri ochokera m'magawo osiyanasiyana amasonkhana kuti apange dongosolo labwino kwambiri la chithandizo cha mwana. Gululi likhoza kuphatikizapo anthu monga:
- Madokotala a ana
- Madokotala a mtima - a matenda a mtima
- Akatswiri a zamaganizo - kuti apititse patsogolo kuyenda kwa thupi ndikulimbitsa minofu
- Akatswiri a matenda a kulankhula - pa mavuto a kulankhula ndi kulankhulana
- Madokotala a m'mimba - a matenda am'mimba
- Akatswiri a maso ndi madokotala a ENT
Nthawi zina, opaleshoni ingafunike kuti akonze vuto la mkamwa kapena vuto la mtima. Mankhwala angaperekedwenso pa mavuto monga asidi m'mimba. Madokotala onsewa amasankha mwana wanu.
Kodi munganene chiyani za mtsogolo?
Mungasangalale kumva izi. Ana ambiri omwe ali ndi CdLS amakhala ndi moyo wabwinobwino. Komabe, chifukwa chakuti ali ndi vuto la maganizo, amafunikira thandizo ndi kuyang'aniridwa m'miyoyo yawo yonse, ngakhale akakula. Izi zikutanthauza kuwapatsa malo otetezeka okhala ndi kugwira ntchito, komanso kuwapatsa ufulu wodziyimira pawokha.
Komabe, nthawi zina, mavuto ena amatha kuchepetsa nthawi yomwe munthu amakhala ndi moyo. Makamaka, chibayo chobwerezabwereza, matenda a mtima obadwa nawo, ndi mavuto akuluakulu a m'mimba zimakhala pachiwopsezo ngati sizipezeka bwino ndikuchiritsidwa.
Choncho, chofunika kwambiri ndi kumusunga mwana wanu pansi pa uphungu ndi chisamaliro choyenera cha dokotala. Mukatero, mwana wanu adzakhala ndi mwayi wokhala ndi moyo wautali komanso wachimwemwe.
Uthenga Wopita Nawo Kunyumba
- Matenda a Cornelia de Lange (CdLS) ndi matenda osowa kwambiri omwe amapezeka kuyambira kubadwa.
- Zizindikiro zimatha kusiyana kwambiri kuchokera kwa mwana aliyense. Zina zimatha kukhala ndi zizindikiro zochepa, pomwe zina zimatha kukhala ndi zizindikiro zoopsa.
- Ngakhale kuti palibe mankhwala enieni a izi, kuthana ndi zizindikiro kungathandize mwana kukhala ndi moyo wabwino.
- Chithandizo cha gulu la madokotala ndi akatswiri odziwa bwino ntchito n'chofunika kwambiri pa izi.
- Ngati muli ndi kukayikira kulikonse za mwana wanu, musazengereze ndipo funsani dokotala wa ana. Ndi chisamaliro choyenera ndi chikondi, ana awa akhoza kukhala ndi moyo wosangalala.
No comments yet. Be the first to share your question or experience below.