Monga kholo, mwina mumadandaula za thanzi la mwana wanu. Nthawi zina zimakhala zachilendo kumva mantha pang'ono mukadziwa za matenda osowa omwe sitinamvepo. Eya, lero tikulankhula za matenda osowa omwe anthu ambiri sanamvepo, koma ndikofunikira kudziwa za iwo. Dzina lake ndi Homocystinuria.
Mwachidule, kodi Homocystinuria (HCY) ndi chiyani?
Taganizirani izi, tikudziwa kuti zakudya zomwe timadya, makamaka nyama, nsomba, mkaka, ndi mazira, zili ndi mapuloteni . Puloteni yayikuluyi imapangidwa ndi tizidutswa tating'onoting'ono totchedwa amino acid . Monga zomangira. Mkati mwa thupi la munthu wathanzi, ma amino acid awa amasweka ndi kugayidwa, ndipo amakhala mphamvu zomwe thupi lathu limafunikira.
Komabe, mwa munthu amene ali ndi Homocystinuria (HCY), thupi silingathe kuswa bwino ndi kugaya amino acid yotchedwa methionine . Izi zimatchedwa matenda a kagayidwe kachakudya. Izi zikachitika, methionine iyi ndi mankhwala ena otchedwa homocysteine, omwe amapangidwa kuchokera pamenepo, amayamba kudziunjikira m'thupi, makamaka m'magazi. Kudziunjikira kumeneku ndi koopsa. Ngati sikuchiritsidwa, izi zingayambitse mavuto aakulu azaumoyo.
Chifukwa chiyani izi zikuchitika? Kodi chifukwa chake ndi chiyani?
Enzyme yapadera m'thupi lathu imathandiza pakuswa amino acid iyi yotchedwa methionine. Taganizirani za enzyme iyi ngati lumo. Lumo ili limadula chinthu chachikulu chotchedwa methionine m'zidutswa zazing'ono.
Kwa munthu amene ali ndi homocystinuria, enzyme iyi (lumo) siipangidwa m'thupi, kapena ngati yapangidwa, sigwira ntchito bwino.
Chofunika ndichakuti matenda amenewa ndi obadwa nawo . Izi zikutanthauza kuti amaperekedwa kwa mibadwomibadwo. Pali majini awiri omwe amakulangizani kupanga enzyme iyi. Limodzi liyenera kukhala lochokera kwa amayi anu ndi lina lochokera kwa abambo anu. Kuti homocystinuria ikule, payenera kukhala vuto m'majini onse awiri omwe amabadwa nawo kuchokera kwa amayi anu ndi abambo anu.
Kodi ndi zizindikiro ziti zomwe tingaone?
Chodabwitsa n'chakuti, mukayang'ana mwana wobadwa ndi Homocystinuria, palibe kusiyana kulikonse. Ndi makanda abwinobwino. Zizindikiro zimayamba kuonekera m'zaka zoyambirira za moyo. Si ana onse omwe amakumana ndi zizindikirozi mofanana. Ana ena akhoza kukhala ndi zizindikiro zingapo, pomwe ena sangasonyeze chilichonse.
Samalani makhalidwe omwe ali patebulo ili m'munsimu.
| Gulu la makhalidwe | Zizindikiro zomwe zimawoneka kawirikawiri |
|---|---|
| Maonekedwe a thupi | Ali ndi khungu ndi tsitsi lotuwa kwambiri, chifuwa chake chosazolowereka, thupi lake lalitali komanso lopyapyala kuposa ana ena, komanso zala zake zazitali komanso zopyapyala. |
| Kukula | Kulemera pang'onopang'ono komanso kukula pang'onopang'ono. |
| Maso | Kutaya kwambiri masomphenya (kulephera kuwona bwino), kusokonekera kwa lenzi, komanso ngakhale khungu. |
| Zizindikiro zina zazikulu | Kufooka kwa mafupa (kufooka), magazi kuundana (zomwe zimawonjezera chiopsezo cha sitiroko ndi matenda a mtima), komanso khunyu. |
| Kukula ndi khalidwe | Kuchedwa kukwawa, kuyenda, ndi kulankhula. Kulephera kuphunzira komanso mavuto amisala. Mavuto okhudza khalidwe ndi maganizo. |
Kodi madokotala amapeza bwanji izi?
M'mayiko ambiri, kuyezetsa magazi kwa makanda kumagwiritsidwa ntchito kuzindikira matenda monga Homocystinuria msanga. Kuyezetsa magazi kumeneku kumapereka chizindikiro cha ngati mwanayo ali pachiwopsezo chotenga matendawa.
Ngati zotsatira zake sizili bwino, dokotalayo adzalangiza kuti mupite kukayezetsa magazi ndi mkodzo kuti atsimikizire matendawa. Ku Sri Lanka, mayesowa nthawi zambiri amalamulidwa pambuyo poti zizindikiro zayamba kuonekera komanso pokhapokha ngati pali zokayikitsa.
Kodi chimachiritsidwa bwanji? Kodi ndi chinthu choopera?
Ayi, musadandaule. Chofunika kwambiri ndi kuyamba kulandira chithandizo mwamsanga matendawa akapezeka.Dokotala wa kagayidwe kachakudya adzakuthandizani ndi izi. Ndondomeko ya chithandizo ikhoza kusiyana malinga ndi mwana.
Pali njira ziwiri zazikulu zochizira:
1. Chithandizo cha Vitamini B6
Pali mtundu wa homocystinuria wosaopsa kwambiri. Ungathe kuthetsedwa pomupatsa mankhwala owonjezera a vitamini B6 ambiri. Dokotala wanu adzayesa mwana wanu kuti adziwe ngati chithandizochi chili choyenera kwa iye. Vitamini iyi ingathandize kupewa mavuto a khalidwe ndi nzeru mwa ana ena, komanso ingathandize kuchepetsa chiopsezo cha mavuto a maso, mafupa, ndi magazi kuundana.
2. Zakudya zapadera (Zakudya Zochepa za Methionine)
Ngati mwana sakulandira chithandizo cha vitamini B6, sitepe yotsatira ndikuyamba kudya zakudya zokhala ndi methionine yochepa . Zakudya zimenezi nthawi zambiri zimakhala za moyo wonse. Ndikofunikira kufunafuna thandizo kwa katswiri wa zakudya yemwe ndi katswiri wa matenda a amino acid.
| Zinthu zofunika kuziganizira mukamadya zakudya zokhala ndi methionine yochepa | |
|---|---|
| Zakudya zokhala ndi mapuloteni ambiri zomwe ziyenera kupewedwa kotheratu |
|
| Zakudya zina zochepetsera kapena kusiya |
|
| Zinthu zomwe mungadye mosamala | Zipatso ndi ndiwo zamasamba zili ndi methionine yochepa kwambiri, kotero zimatha kudyedwa mochuluka , monga momwe dokotala wanu komanso katswiri wa zakudya adalangizira. |
Kuphatikiza apo, dokotala akulangiza kuti mwana aperekedwe mkaka wapadera m'malo mwa mkaka. Mkaka uwu uli ndi michere ina yonse yofunikira pakukula kwa mwana, ndipo methionine imachotsedwa.
Komanso, dokotala angapereke mankhwala ena owonjezera.
- Betaine ndi folic acid: Izi zimachepetsa kuchuluka kwa homocysteine yoopsa yomwe imasonkhana m'magazi.
- Vitamini B12 ndi L-cysteine: Izi zitha kukhala zochepa chifukwa cha matendawa. B12 imaperekedwa ngati jakisoni ndipo L-cysteine imaperekedwa ngati chowonjezera.
Kuti muwonetsetse kuti chithandizocho chikugwira ntchito, magazi ndi mkodzo wa mwana wanu ziyenera kuyesedwa nthawi zonse. Pamene mwana wanu akukula, mungafunike kusintha pang'ono pa dongosolo la chithandizo.
Ndiye, kodi tiyenera kuganizira chiyani za mtsogolo?
Nkhani yabwino ndi yakuti ngati chithandizo chiyambitsidwa msanga ndikupitiliza bwino, mwanayo akhoza kukula bwino . Chithandizo choyenera chingachepetsenso kwambiri chiopsezo cha sitiroko, matenda a mtima, ndi magazi kuundana.
Nthawi zina, mavuto a masomphenya angachitike ngakhale mutalandira chithandizo. Koma amatha kuthetsedwa ndi opaleshoni kapena njira zina. Chofunika kwambiri ndikulankhulana ndi dokotala nthawi zonse ndikutsatira malangizo ake molondola.
Uthenga Wopita Nawo Kunyumba
- Homocystinuria ndi matenda osowa kwambiri omwe thupi silingathe kugaya methionine, amino acid yomwe imapezeka muzakudya zomwe timadya.
- Imeneyi ndi vuto lomwe limabwera chifukwa cha majini olakwika omwe amalandira kuchokera kwa mayi ndi bambo.
- Zizindikiro (kufupika kwa thupi, mavuto a maso, kuchedwa kukula) zimaonekera mwana atangobadwa kumene.
- Vutoli lingathe kuthetsedwa bwino ndi zakudya zapadera zomwe zili ndi vitamini B6 kapena methionine yochepa.
- Kuzindikira msanga matendawa komanso kulandira chithandizo cha moyo wonse kungathandize mwana wanu kukhala ndi moyo wathanzi komanso wabwinobwino. Ngati muli ndi nkhawa iliyonse pankhaniyi, lankhulani momasuka ndi dokotala wanu.
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