A matsayinka na iyaye, wataƙila koyaushe kana tunanin lafiya da ci gaban ɗanka. Wani lokaci, muna ci karo da yanayi mai wuya wanda ba mu ji labarinsa sosai ba. Ɗaya daga cikin irin wannan yanayin kwayoyin halitta mai wuya amma mai mahimmanci shine Cornelia de Lange Syndrome, ko `(CdLS)` a takaice. Kafin mu tsorata game da wannan, bari mu yi magana a kai a hankali kuma mu fahimci menene.
Menene ainihin cutar Cornelia de Lan (CdLS)?
A taƙaice dai, `(CdLS)` wata cuta ce ta kwayoyin halitta da ba kasafai ake samu ba a lokacin haihuwa. Tana iya shafar sassa da dama na jikin yaron. A taƙaice dai, tana faruwa ne sakamakon canji (maye gurbi) a cikin kwayoyin halitta da dama da suka shafi ci gaban jikinmu.
Ana iya ganin wannan yanayin a manyan siffofi guda biyu. Ɗaya shine siffa mai sauƙi , ɗayan kuma siffa mai kyau . Yawancin lokaci, idan ana maganar wannan cuta, muna magana ne game da siffa mai kyau. Duk da haka, yara masu siffa mai sauƙi suma suna iya nuna waɗannan alamun, amma kaɗan kaɗan.
Jarirai masu fama da CdLS galibi ana haihuwarsu ƙanana a nauyi da girma. Zagayen kawunansu na iya zama ƙanƙanta fiye da na jariri na yau da kullun. A fannin likitanci, ana kiran wannan da microcephaly . Baya ga waɗannan canje-canje na jiki, akwai wasu ƙalubale na hankali da ɗabi'a. Wasu yara kuma suna iya samun jinkirin magana.
Mene ne alamun wannan yanayin?
Ana iya ganin alamun 'CdLS' kafin ko bayan haihuwar jariri. Akwai wasu siffofi na yau da kullun a cikin bayyanar yara masu wannan yanayin. Hakanan suna iya ganin matsaloli tare da tsarin narkewar abinci da ci gaban hankali. Bari mu duba waɗannan a cikin tebur.
| Nau'in Halayya | Abubuwan da za a gani |
|---|---|
| Babban halayen jiki | |
| Kai da fuska | - Ƙarami fiye da na al'ada (Microcephaly) - Dogayen gashin ido - gashin ido mai kauri ko siriri, mai tsakiya, mai gefe ɗaya - Layin gashi na ƙasa - Hanci mai karkata, gajere - Lebe mai laushi, siririn lebe - Hakora da idanu da suka yi nisa da juna |
| Sauran sassan jiki | - Girman gashi a jiki da ya wuce kima - Matsalolin da ke tattare da ci gaban hannaye da ƙafafu - Matsalolin zuciya - Bakin da ya yi kauri - Cryptorchidism (ƙwayar da ba ta da girma a cikin yara maza) |
| Matsalolin Cikin Gastrointestinal | |
| Matsalolin da aka saba fuskanta | - Maƙarƙashiya - Gudawa - Amai - Cike ciki - Rashin ci abinci lokaci-lokaci - GERD (cututtukan acid na ciki) |
| Matsalolin hankali da ɗabi'a | |
| Halayya da Ci gaba | - Jinkirin ci gaba - Nakasassu na ilmantarwa - Matsalolin ɗabi'a - Ciwon Hawan Jini da Rashin Hankali (ADHD) - Damuwa - Yanayin Autism `(Autism)` |
Bugu da ƙari, wasu yara na iya samun matsalar ji da gani (misali, myopia).
Me ke haifar da hakan? Shin gado ne?
CdLS wata cuta ce da za ta iya shafar kowa, ba tare da la'akari da launin fata ko jinsi ba. A mafi yawan lokuta, ana haifar da ita ne sakamakon canjin kwayoyin halitta wanda ke faruwa kwatsam kuma ba a taɓa ganin irinsa a cikin iyali ba a da.
Zuwa yanzu, an gano kimanin kwayoyin halitta 7 da ke haifar da wannan yanayin 'CdLS'. Yaro mai wannan yanayin na iya samun canje-canje a cikin ɗaya ko fiye daga cikin waɗannan kwayoyin halitta. Yanayi da tsananin cutar sun dogara ne akan wace kwayar halitta ce canjin kwayoyin halitta ke faruwa a ciki da kuma yadda ake yi. Misali, yaran da ke da canjin kwayar halitta '(NIPBL)' na iya samun alamun cutar mafi tsanani.
Abu mafi mahimmanci shine idan yaro ɗaya a cikin iyali yana da 'CdLS', yuwuwar samun yaron da ke gaba ba shi da yawa (kimanin 1-2%).
Duk da haka, a lokuta da ba kasafai ake samun irin wannan matsala ba, idan iyaye ɗaya yana da wannan matsalar ta 'CdLS', akwai yiwuwar kashi 50% na yaron ya gaji. Wannan ana kiransa gadon '(Autosomal dominant)'.
Yaya ake gane cutar?
Idan kana zargin cewa ɗanka yana da waɗannan alamun, matakin farko da ya kamata ka ɗauka shine ganin likitan yara .
Likitan zai fara yin cikakken bincike na lafiyar yaron sannan ya tambaye ku game da tarihin lafiyar ɗanku da iyalinku. Za su bincika musamman alamun jiki da alamun da ke da alaƙa da CdLS.
Sannan, ana iya ba da shawarar gwajin kwayoyin halitta don tabbatar da ganewar asali. Wannan galibi yana neman canje-canje a cikin waɗannan kwayoyin halitta:
- `NIPBL`
- 'SMC1A'
- `RAD21`
- 'SMC3'
- `HDAC8`
A lokacin daukar ciki, daukar hoton duban dan tayi tsakanin makonni 18-20 na iya gano wasu matsaloli a fuskar jaririn ko gaɓoɓinsa. Wannan na iya bayar da wasu alamu game da CdLS.
Yaya ake yi masa magani?
Yana da muhimmanci a san wannan: Babu wani takamaiman magani da zai iya warkar da CdLS gaba ɗaya. Duk da haka, wannan ba yana nufin babu abin da za mu iya yi ba. Babban burin magani shine a magance alamun yaron da kuma taimaka masa ya rayu cikin koshin lafiya da farin ciki gwargwadon iko.
Likita ɗaya bai isa ba don wannan. Ƙungiyar ƙwararru da masu ilimin hanyoyin kwantar da hankali daga fannoni daban-daban sun haɗu don ƙirƙirar mafi kyawun tsarin magani ga yaron. Wannan ƙungiyar na iya haɗawa da mutane kamar:
- Likitocin yara
- Likitocin zuciya - don cututtukan zuciya
- Masu ilimin motsa jiki - don inganta motsin jiki da ƙarfafa tsokoki
- Masana ilimin magana - don matsalolin magana da sadarwa
- Likitocin Gastroenterologists - don matsalolin ciki
- Kwararrun ido da likitocin ENT
A wasu lokuta, ana iya buƙatar tiyata don gyara wani ɓawon baki ko lahani na zuciya. Haka kuma ana iya ba da magani ga matsaloli kamar su acid na ciki. Duk waɗannan shawarwari likitoci ne ke yankewa waɗanda ke duba ɗanku.
Me za ka ce game da makomar?
Za ka iya jin wannan. Yawancin yaran da ke fama da "CdLS" suna rayuwa ne ta hanyar rayuwa ta yau da kullun. Duk da haka, saboda suna da wani matakin nakasa ta hankali, za su buƙaci tallafi da kulawa a duk rayuwarsu, har ma har zuwa lokacin girma. Wannan yana nufin samar musu da yanayi mai aminci don rayuwa da aiki, tare da ba su 'yancin kai.
Duk da haka, a lokuta masu wuya, wasu matsaloli na iya rage tsawon rai. Musamman ma, ciwon huhu mai sake dawowa, nakasar zuciya da aka haifa a lokacin haihuwa, da kuma matsalolin narkewar abinci masu tsanani suna cikin haɗari idan ba a gano su da kyau ba kuma ba a yi musu magani yadda ya kamata ba.
Saboda haka, abu mafi mahimmanci shine a ci gaba da kula da yaronka da shawarwarin likita da suka dace. Idan ka yi haka, yaronka zai sami damar rayuwa mai tsawo da farin ciki.
Saƙon Ɗauka Gida
- Ciwon Cornelia de Lange (CdLS) wani yanayi ne na kwayoyin halitta da ba kasafai ake samunsa ba tun daga haihuwa.
- Alamomin na iya bambanta sosai daga yaro zuwa yaro. Wasu na iya samun ƙananan alamu, yayin da wasu kuma na iya samun manyan alamu.
- Ko da yake babu takamaiman maganin wannan, kula da alamun na iya taimaka wa yaron ya rayu rayuwa mafi kyau.
- Goyon bayan ƙungiyar likitoci da masu ilimin hanyoyin kwantar da hankali yana da matuƙar muhimmanci ga wannan.
- Idan kana da wata shakka game da ɗanka, kada ka yi jinkiri ka nemi shawarar likitan yara. Da kulawa da ƙauna mai kyau, waɗannan yaran za su iya rayuwa cikin farin ciki.
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