Makhalidwe a Prader Willi syndrome ndi momwe angachiritsire

Zamkati

• Zinthu zazikulu
• Makanda ndi ana mpaka zaka ziwiri
• Ana ndi akulu
• Zomwe zimayambitsa matendawa
• Momwe mankhwalawa amachitikira

Matenda a Prader-Willi ndi matenda osowa amtundu omwe amachititsa mavuto a metabolism, kusintha kwa machitidwe, kufooka kwa minofu ndikuchedwa kukula. Kuphatikiza apo, chinthu china chofala kwambiri ndikuwoneka kwa njala yochulukirapo zaka ziwiri, zomwe zimatha kubweretsa kunenepa kwambiri komanso matenda ashuga.

Ngakhale matendawa alibe mankhwala, pali mankhwala ena, monga ntchito yakuntchito, kulimbitsa thupi ndi psychotherapy zomwe zingathandize kuchepetsa zizindikilo ndikupereka moyo wabwino.

Zinthu zazikulu

Makhalidwe a Prader-Willi matenda amasiyana mosiyanasiyana kuyambira mwana mpaka mwana ndipo nthawi zambiri amakhala osiyana malinga ndi msinkhu:

Makanda ndi ana mpaka zaka ziwiri

• Minofu kufooka: nthawi zambiri zimabweretsa kuti mikono ndi miyendo zimawoneka ngati zopanda pake;
• Zovuta kuyamwitsa: zimachitika chifukwa cha kufooka kwa minofu komwe kumalepheretsa mwana kukoka mkaka;
• Mphwayi: mwana amawoneka wotopa nthawi zonse ndipo samayankha pang'ono;
• Ziwalo zoberekera zomwe sizinakule: ndi zazikulu zazing'ono kapena zosakhalapo.

Ana ndi akulu

• Njala yochuluka: mwanayo amangokhalira kudya komanso mochuluka, kuphatikiza pakufuna chakudya pafupipafupi kapena m'zinyalala;
• Kuchedwa kukula ndi chitukuko: ndizofala kuti mwana akhale wamfupi kuposa masiku onse komanso kukhala ndi minofu yochepa;
• Zovuta zophunzirira: kutenga nthawi yayitali kuti muphunzire kuwerenga, kulemba kapena kuthetsa mavuto a tsiku ndi tsiku;
• Mavuto olankhula: kuchedwa kufotokoza mawu, ngakhale atakula;
• Zovuta m'thupi: monga manja ang'onoang'ono, scoliosis, kusintha kwa mawonekedwe a m'chiuno kapena kusowa mtundu kwa tsitsi ndi khungu.

Kuphatikiza apo, ndizofala kwambiri kukhala ndi mavuto amakhalidwe monga kukhala ndi malingaliro okwiya pafupipafupi, kuchita zinthu mobwerezabwereza kapena kuchita zinthu mwankhanza china chake chikakanidwa, makamaka pankhani ya chakudya.

Zomwe zimayambitsa matendawa

Matenda a Prader-Willi amapezeka akasintha gawo lina la chromosome 15, lomwe limasokoneza magwiridwe antchito a hypothalamus ndikuwonetsa zizindikilo za matendawa kuyambira mwana atabadwa. Nthawi zambiri, kusintha kwa chromosome kumachokera kwa bambo, koma pamakhalanso zochitika zomwe zimachitika mosasamala.

Matendawa nthawi zambiri amapangidwa kudzera pakuwona zidziwitso ndi kuyesa kwa majini, zomwe zimawonetsedwa kwa akhanda omwe ali ndi kuchepa kwa minofu.

Momwe mankhwalawa amachitikira

Chithandizo cha matenda a Prader-Willi chimasiyana malinga ndi zizindikiritso za mwanayo, chifukwa chake, gulu la akatswiri azachipatala lingakhale lofunikira, chifukwa njira zosiyanasiyana zochiritsira zitha kukhala zofunikira, monga:

• Kugwiritsa ntchito kukula kwa hormone: imagwiritsidwa ntchito mwa ana kulimbikitsa kukula, kutha kupewa kutalika kwakanthawi ndikusintha mphamvu yamphamvu;
• Kufunsa zaumoyo: Amathandizira kuthana ndi zikhumbo za njala ndikuwongolera kukula kwa minofu, kupereka michere yofunikira;
• Thandizo la mahomoni ogonana: amagwiritsidwa ntchito pakakhala kuchedwa kukula kwa ziwalo zogonana za mwana;
• Kuchiza matenda: Amathandizira kuwongolera kusintha kwamachitidwe amwana, komanso kupewa zikhumbo za njala;
• Mankhwala othandizira: Mankhwalawa amalola kupita patsogolo kokhudzana ndi chilankhulo komanso njira zolankhulirana za anthuwa.
• Kuchita masewera olimbitsa thupi: Kuchita masewera olimbitsa thupi pafupipafupi ndikofunikira kuti thupi likhale lolimba komanso kulimbitsa minofu.
• Physiotherapy: Kuchita masewera olimbitsa thupi kumathandizira kukweza minofu, kumawongolera bwino komanso kumawongolera luso lamagalimoto.
• Thandizo pantchito: Thandizo lantchito limapatsa odwala Prader-Willi ufulu wodziyimira pawokha komanso kudziyimira pawokha pazochitika za tsiku ndi tsiku.
• Thandizo lazamaganizidwe: Thandizo lazamaganizidwe ndilofunikira kuwongolera munthuyo ndi banja lake momwe angathanirane ndi zizolowezi zongokakamira komanso zovuta zam'maganizo.

Njira zina zamankhwala zitha kugwiritsidwanso ntchito, zomwe nthawi zambiri amalimbikitsidwa ndi dokotala wa ana atawona momwe mwana aliyense amakhalira.