Siffofin cutar Prader Willi da yadda ake magance su

Wadatacce

• Babban fasali
• Yara da yara har zuwa shekaru 2
• Yara da manya
• Abin da ke haifar da ciwo
• Yadda ake yin maganin

Cutar Prader-Willi wata cuta ce ta ƙwayoyin cuta wacce ke haifar da matsaloli tare da maye gurbi, canje-canje a cikin halayya, ƙoshin tsoka da jinkirin haɓaka. Bugu da kari, wani fasalin da aka saba da shi shi ne bayyanar yunwa fiye da kima bayan shekara biyu, wanda zai iya haifar da haifar da kiba da ciwon sukari.

Kodayake wannan ciwo ba shi da magani, akwai wasu jiyya, kamar su aikin likita, gyaran jiki da kuma halayyar kwakwalwa waɗanda za su iya taimakawa wajen rage alamun da samar da ingantacciyar rayuwa.

Babban fasali

Halaye na cututtukan Prader-Willi sun bambanta sosai daga yaro zuwa yaro kuma yawanci ya bambanta dangane da shekaru:

Yara da yara har zuwa shekaru 2

• Raunin jijiyoyi: yawanci yakan haifar da cewa hannaye da kafafu suna da rauni sosai;
• Matsalar shayarwa: yana faruwa ne saboda raunin tsoka wanda ya hana yaro jan nono;
• Rashin kulawa: jariri yana da alama koyaushe yana gajiya kuma yana da ɗan amsawa ga abubuwan motsa jiki;
• Rashin al'aura: tare da ƙananan ko babu girma.

Yara da manya

• Yawan yunwa: yaro yana cin abinci koyaushe kuma cikin adadi mai yawa, ban da yawan neman abinci a cikin kabad ko cikin kwandon shara;
• Jinkirta girma da ci gaba: abu ne gama gari ga yaro ya kasance mai gajarta fiye da na al'ada kuma yana da ƙarancin tsoka;
• Matsalar ilmantarwa: ɗauki dogon lokaci don koyon karatu, rubutu ko ma magance matsalolin yau da kullun;
• Matsalar magana: jinkiri a cikin maganganun kalmomi, har ma da balaga;
• Rashin nakasa a jiki: kamar ƙananan hannaye, scoliosis, canje-canje a siffar kwatangwalo ko rashin launi a gashi da fata.

Kari kan haka, har yanzu abu ne da ake samun matsalolin halaye kamar samun halaye masu yawa na fushi, yin maimaitattun abubuwa na yau da kullun ko aikata mugunta lokacin da aka hana wani abu, musamman ma dangane da abinci.

Abin da ke haifar da ciwo

Cutar Prader-Willi tana faruwa ne yayin da aka sami canji a cikin ƙwayoyin halitta na wani sashi akan 15 na chromosome, wanda ke rikita ayyukan hypothalamus kuma yana haifar da alamun cutar tun haihuwar yaron. A yadda aka saba, canjin chromosome ana gado ne daga uba, amma kuma akwai lokuta inda yake faruwa ba zato ba tsammani.

Ana yin binciken ne yawanci ta hanyar lura da alamomi da gwaje-gwajen kwayoyin halitta, wanda aka nuna ga jarirai da ƙananan ƙwayar tsoka.

Yadda ake yin maganin

Maganin cutar Prader-Willi ya bambanta gwargwadon alamun yara da halayensa kuma, sabili da haka, ƙungiyar ƙwararrun likitoci da yawa na iya zama dole, tunda dabarun magani daban-daban na iya zama dole, kamar:

• Amfani da haɓakar girma: ana amfani da shi koyaushe a cikin yara don haɓaka ci gaba, da ikon kauce wa gajarta da inganta ƙarfin jijiyoyin jiki;
• Shawarwarin abinci mai gina jiki: yana taimakawa wajen sarrafa tasirin yunwa da haɓaka ci gaban tsokoki, samar da abubuwan gina jiki da ake buƙata;
• Jima'i far far: ana amfani da su yayin da aka sami jinkiri wajen haɓaka gabobin yarinta;
• Psychotherapy: yana taimakawa wajen sarrafa canje-canje a ɗabi'un yaro, tare da hana bayyanar yunwa;
• Maganin magana: Wannan maganin yana ba da damar samun wasu ci gaba masu alaƙa da yare da hanyoyin sadarwa na waɗannan mutane.
• Motsa jiki: Yawan motsa jiki yana da mahimmanci dan daidaita nauyin jiki da karfafa jijiyoyi.
• Jiki: Maganin motsa jiki yana inganta sautin tsoka, yana inganta daidaito da haɓaka ƙwarewar motsa jiki mai kyau.
• Ayyukan sana'a: Maganin aiki yana ba marasa lafiya Prader-Willi babban independenceancin kai da cin gashin kai a cikin ayyukan yau da kullun.
• Taimakon ilimin kimiyya: Tallafin ƙwaƙwalwa yana da mahimmanci don jagorantar mutum da iyalinsa kan yadda za a magance ɗabi'un tilastawa da rikicewar yanayi.

Hakanan za'a iya amfani da wasu nau'ikan hanyoyin kwantar da hankali, waɗanda galibi likitan yara ke ba da shawarar bayan lura da halaye da halayen kowane yaro.