Kodi munayamba mwaonapo mawanga ofiira, otuwa, kapena amitundu yosiyanasiyana pakhungu la mwana wanu atangobadwa, kapena milungu ingapo pambuyo pake? Nthawi zina, monga mayi, kuona izi kungakhale koopsa. Lero, tikambirana za vuto lomwe limayambitsa zizindikiro zofanana, zomwe sizichitika kawirikawiri, koma ndizofunikira kudziwa. Izi zimatchedwa Incontinentia Pigmenti, kapena IP mwachidule.
Kodi Incontinentia Pigmenti (IP) ndi chiyani kwenikweni?
Mwachidule, iyi ndi matenda a majini. Chifukwa chakuti ndi X-linked dominant, imakhudza atsikana kwambiri kuposa anyamata.
IP ndi ya gulu la matenda otchedwa ``neurocutaneous disorders''. Tangoganizirani, izi zikutanthauza kuti matendawa angakhudze dongosolo lathu la mitsempha (ndiko kuti, ubongo ndi mitsempha) ndi khungu nthawi imodzi. Sikuti zokhazo, komanso nthawi zina zingakhudze maso, mano, ndi mafupa.
Matendawa amapezeka makamaka akangobadwa kapena m'masabata oyamba kubadwa, ndipo mawanga ndi matuza osiyanasiyana amaonekera pakhungu. Izi zimachitika chifukwa cha kusintha kwa majini otchedwa NEMO (NF-kappaB essential modulator), komwe kumayang'anira ntchito ndi kukula kwa maselo athu. Pakadali pano, palibe mankhwala athunthu a izi, koma pali mankhwala abwino oletsa zizindikiro.
Kodi kusintha kwa khungu ndi kotani? Pali magawo anayi!
Kusintha kwa khungu mu IP kungadziwike m'magawo anayi akuluakulu. Koma kumbukirani, magawo awa safunika kuchitika motsatizana. Nthawi zina amatha kusinthana, ndipo magawo awiri kapena atatu amatha kuwoneka nthawi imodzi.
| Gawo | Maonekedwe ndi Kufotokozera |
|---|---|
| Gawo 1: Vesicular | Izi zimadziwika ndi maonekedwe a matuza ofiira, odzaza ndi madzi pathupi. Izi nthawi zambiri zimawoneka m'manja ndi m'mapazi. |
| Gawo 2: Verrucal | Zilonda zatsopano, zofanana ndi ziphuphu zimaonekera pomwe panali matuza. |
| Gawo 3: Kuchuluka kwa pigmentation | Ichi ndi chizindikiro chodziwika bwino cha matendawa. Khungu limawoneka ngati mizere imvi, yabuluu, kapena yofiirira, yozungulira kapena yozungulira. Izi zimawonekera nthawi zambiri pathupi ndi miyendo. |
| Gawo 4: Kuchepa kwa khungu | Pakapita nthawi, mawanga akuda amenewo amachepa, kusiya zilonda zotumbululuka, zonga zipsera zomwe zimakhala zofiirira kuposa mtundu wa khungu. |
Kodi ndi mawanga a pakhungu okha? Ayi, pakhoza kukhala zotsatira zinanso
Vutoli silikhudza khungu lokha. Ana ena amathanso kukhala ndi mavuto ena. Komabe, muyenera kumvetsetsa kuti si zizindikiro zonsezi zomwe zimachitika mwa mwana aliyense.
Mavuto a Mitsempha
Pafupifupi 20% ya ana omwe ali ndi IP akhoza kukhala ndi mavuto a mitsempha.
- Kuchedwa kwa kukula kwa minofu: Mwachitsanzo, sangathe kutembenuza khosi lawo, kupindika, kapena kuyenda mofanana ndi makanda ena.
- Kulemala kwa nzeru: Zinthu monga kulemala kuphunzira.
- Kufooka kwa minofu: Kumva kufooka.
- Kugwidwa ndi khunyu: Kupezeka kwa matenda ofanana ndi a chimfine.
Izi zitha kuchitika chifukwa cha zinthu monga kuchepa kwa minofu ya ubongo (cerebral atrophy) komanso kupangika kwa mabowo ang'onoang'ono mu white matter ya ubongo.
Zotsatirapo pa maso ndi mano
- Mavuto a maso: Ana ena amatha kukhala ndi matenda monga strabismus, cataract, kapena kulephera kuona bwino.
- Mavuto a mano: Mano osowa ndi mano ooneka ngati chigoba amatha kuwoneka.
Chofunika kwambiri si kuchita mantha mukangoona chizindikiro chonga ichi, koma kupita kwa dokotala wa ana kuti akakupatseni upangiri.
Kodi izi zimachiritsidwa bwanji?
IP imachiritsidwa kutengera zizindikiro za mwana. Njira zochiritsira zomwe zimagwirizana ndi munthu aliyense zimatha kusiyana.
| Vuto (Chizindikiro) | Njira Yothandizira |
|---|---|
| Mawanga ndi matuza pakhungu | Nkhani yabwino ndi yakuti madontho a pakhungu amenewa nthawi zambiri safuna chithandizo chapadera. Nthawi zambiri amachoka okha akamakula kapena akakula. |
| Mavuto a mitsempha (kukomoka, kufooka kwa minofu) | Pa zinthu ngati izi, muyenera kuwonana ndi dokotala wa mitsempha . Kenako, mavutowa amatha kuthetsedwa ndi mankhwala kapena, ngati pakufunika, zida zina zachipatala. |
| Kulephera kuwona bwino | Ngati muli ndi vuto la maso, mutha kuwonana ndi dokotala wa maso ndikupeza magalasi, mankhwala, kapena, ngati zinthu zavuta kwambiri, opaleshoni. |
| Mavuto a mano | Ngati pali vuto ndi mawonekedwe kapena kuchuluka kwa mano, mutha kupempha chithandizo chofunikira kwa dokotala wa mano. |
Ndiye, kodi tiyenera kuopa za tsogolo?
Funso limeneli ndi limene makolo ambiri amakhala nalo. Ndipotu, nthawi zambiri, ngati palibe mavuto aakulu ali aang'ono, ana omwe ali ndi IP amatha kukhala ndi moyo wabwinobwino ndikukhala ndi moyo wathanzi komanso wabwinobwino . Pakapita nthawi, mawanga akuda pakhungu amatha kuzimiririka, ndipo amatha kutha konse.
Komabe, monga tanenera kale, pali ana omwe ali ndi mavuto a mitsempha kapena ena akuthupi. Chifukwa chake, chinthu chabwino kwambiri choti muchite ndikulankhula ndi dokotala wanu za matenda a mwana wanu. Kenako mutha kumvetsetsa bwino dongosolo labwino kwambiri lazaumoyo la mwana wanu komanso zomwe mungachite kenako.
Uthenga Wopita Nawo Kunyumba
- Incontinentia Pigmenti (IP) ndi matenda osowa kwambiri omwe amakhudza kwambiri atsikana.
- Chizindikiro chachikulu ndi kusintha kwa khungu motsatizana (matuza, mabala okhwima, mabala akuda okhala ndi makwinya, ndi mabala otumbululuka).
- Kuwonjezera pa mavuto a pakhungu, ana ena akhoza kukhala ndi mavuto okhudzana ndi mitsempha, maso, ndi mano.
- Madontho a pakhungu nthawi zambiri amatha pakapita nthawi popanda chithandizo.
- Ana ambiri amatha kukhala ndi moyo wabwinobwino komanso wathanzi popanda mavuto aakulu.
- Ngati mwana wanu ali ndi zizindikiro izi, ndikofunikira kwambiri kuti musachite mantha ndikupita kwa dokotala wa ana kuti akakupatseni malangizo oyenera.
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