Tiyeni tiphunzire za Williams Syndrome. Musachite mantha, tiyeni tikambirane.

Kodi mwana wanu ndi wochezeka kwambiri? Kodi ndi munthu wachikondi kwambiri amene amamwetulira ndi kulankhula ndi aliyense amene amamuona? Nthawi yomweyo, kodi nthawi zina pamakhala kuchedwa pang'ono kwa chitukuko kapena mavuto ophunzirira? Nthawi zina, kumbuyo kwa makhalidwe amenewa, pakhoza kukhala vuto la majini lotchedwa Williams Syndrome. Musachite mantha mukamva dzinali. Ichi ndi chinthu chomwe tiyenera kukambirana ndikumvetsetsa. Lero, tikambirana chilichonse m'njira yosavuta yomwe mungamvetse.

Mwachidule, kodi Williams Syndrome ndi chiyani?

Matenda a Williams, omwe nthawi zina amatchedwa Williams-Beuren syndrome, ndi matenda osowa kwambiri omwe amapezeka pobadwa. Amakhudza kukula kwa mitsempha. Ana omwe ali ndi vutoli akhoza kukhala ndi mawonekedwe osiyana, kuchedwa kukula, mavuto ophunzirira, komanso matenda a mtima.

Tangoganizani kuti thupi lathu lapangidwa ndi buku lalikulu la malangizo. Buku la malangizoli lili ndi majini. Majini awa ali mu ma chromosome. Tili ndi ma chromosome awiriawiri 23, omwe ndi 46 onse . Munthu amene ali ndi matenda a Williams ali ndi chidutswa chaching'ono chomwe sichili mu chromosome 7. Zili ngati tsamba losowa mu buku la malangizoli. Chifukwa cha tsamba losowali, ntchito zina za thupi ndi chitukuko zimachitika mosiyana. Ndicho chimene timachitcha kuti Williams syndrome.

Kodi vutoli lingakhudze bwanji mwana?

Si ana onse omwe ali ndi vutoli omwe ali ofanana. Zizindikiro zimatha kusiyana malinga ndi munthu. Koma pali zizindikiro zina zodziwika bwino. Tiyeni tifotokoze mwachidule.

Makhalidwe ndi mawonekedwe a thupi

Ana awa akhoza kukhala ndi mawonekedwe okongola komanso apadera.

Kukula ndi khalidwe

Ana awa amatenga nthawi kuti afike pamlingo winawake wokulirapo, koma alinso ndi luso lapadera.

• Kulankhula: Akhoza kukhala atachedwa pang'ono kuyamba kulankhula, koma akamaliza, amakhala ndi luso lolankhula bwino kwambiri . Amalankhula bwino kwambiri komanso mofotokozera.
• Kusuntha: Chifukwa cha kuchepa kwa minofu (hypotonia), zimatenga nthawi yayitali kuposa ana ena kuphunzira zinthu monga kukhala pansi ndi kuyenda.
• Kuphunzira: Angakhale ndi vuto linalake pophunzira manambala, zilembo, ndi kumvetsetsa malo (mmwamba, pansi, pafupi, patali). Koma ali ndi kukumbukira bwino kwambiri .
• Kukhala ndi anthu ocheza nawo: Ichi ndi khalidwe lodziwika bwino la ana awa. Ndi ochezeka kwambiri, achikondi, komanso achifundo. Amavutika kuzindikira alendo, kotero amapeza mabwenzi mwachangu ndi aliyense. Nthawi zina amatha kukhala ndi nkhawa kwambiri kapena mantha a zinthu zina (mantha).

Mavuto ena azaumoyo

Vutoli lingayambitsenso mavuto ena azaumoyo. Ndikofunikira kudziwa izi.

• Matenda a mtima: Ichi ndi chinthu chofunika kwambiri choyenera kusamala nacho . Kuchepa kwa mitsempha ikuluikulu ya magazi yolumikizidwa ndi mtima n'kofala. Izi zingayambitse matenda monga kuthamanga kwa magazi komanso kugunda kwa mtima kosakhazikika (arrhythmia).
• Kuchuluka kwa calcium m'magazi ndi mkodzo kungachuluke.
• Mavuto a mahomoni: Pali chiopsezo cha hypothyroidism, kutha msinkhu msanga, komanso matenda a shuga akakula.
• Matenda a m'makutu: Matenda a m'makutu obwerezabwereza angayambitse kutayika kwa kumva.
• Zina: Scoliosis, kuvutika kudya ali mwana, ndi mavuto a maso (kusawona patali) zingaonekenso.

Kodi dokotala amazindikira bwanji izi?

Dokotala wanu angaganizire za vutoli ngati akukayikira kuti mwana wanu ali ndi vuto la kukula mochedwa kapena akuda nkhawa ndi maonekedwe ake. Njira yayikulu yotsimikizira kuti ali ndi matendawa ndi kuyesa majini . Izi zili ngati kuyezetsa magazi nthawi zonse. Kungathe kuwona ngati pali chromosome 7 yomwe yasowa.

Kuphatikiza apo, mayeso ena angapo angachitike kuti atsimikizire zizindikiro zina:

• Kuyezetsa mtima: Kuyezetsa mtima (ECG) kapena kusanthula mtima (Echocardiogram) kumachitika kuti aone ngati pali mavuto mumtima ndi mtsempha wamagazi.
• Kuyeza kuthamanga kwa magazi: Ndikofunikira kuyang'ana kuthamanga kwa magazi kwa mwana wanu nthawi zonse.
• Kuyezetsa magazi ndi mkodzo: Kuyezetsa kumeneku kumachitika kuti muwone kuchuluka kwa calcium m'thupi komanso momwe impso zimagwirira ntchito.

Kodi imachiritsidwa ndi kuyendetsedwa bwanji?

Matenda a Williams sangathe kuchiritsidwa kwathunthu chifukwa ndi matenda obadwa nawo. Komabe, zizindikiro ndi mavuto okhudzana ndi matendawa amatha kuthandizidwa bwino ndipo mwanayo akhoza kukhala ndi moyo wabwinobwino komanso wachimwemwe.

Ndondomeko ya chithandizo imasiyana malinga ndi mwana ndipo imafuna thandizo la akatswiri osiyanasiyana.

1. Katswiri wa matenda a mtima: Ndikofunikira kufufuza mtima wa mwana nthawi zonse. Ngati pali vuto, chithandizo chofunikira (mankhwala kapena opaleshoni) chidzaperekedwa.

2. Kuchiza Mwamsanga: Pali njira zosiyanasiyana zothandizira kukula ndi kuphunzira kwa mwana. Chithandizo cha Kulankhula, Chithandizo cha Occupational Therapy, ndi Physiotherapy ndizomwe zimayang'anira kwambiri.

3. Maphunziro Apadera: Njira zapadera zophunzitsira zingakhale zofunikira kuti tithetse mavuto ophunzirira omwe angabuke kusukulu.

4. Akatswiri ena: Ndikofunikira kuonana ndi madokotala omwe ali akatswiri m'magawo awa kuti azitha kuwongolera kuchuluka kwa calcium m'thupi, kuchiza mavuto a mahomoni, komanso kuyang'ana thanzi la mano ndi maso anu.

Nthawi yoti mukaonane ndi dokotala komanso nthawi yoti mupite ku ETU

Ndikofunikira kwambiri kusamala thanzi la mwana wanu. Musazengereze kufunafuna upangiri wa dokotala pazochitika zotsatirazi.