Kodi munayamba mwazindikirapo kuti gawo limodzi la thupi la mwana wanu, mwina mkono, mwendo, kapena chala, ndi lalikulu kwambiri poyerekeza ndi thupi lonse? Kapena munayamba mwazindikirapo chinthu chachilendo, monga kachiphuphu kakang'ono pakhungu lawo kapena malo osakanikirana a mitsempha yamagazi? Ndizachilendo kuti kholo lililonse lizida nkhawa likawona chinthu chonga ichi. Lero tikulankhula za gulu la matenda osowa omwe angayambitse zinthuzi. Amatchedwa PROS, kapena PIK3CA-Related Overgrowth Spectrum.
Tiyeni timvetse bwino zomwe ZOTHANDIZA ndi PIK3CA zili.
Choyamba, PROS si matenda amodzi. Ndi matenda osiyanasiyana. Matenda onsewa ali ndi chinthu chimodzi chofanana. Izi zikutanthauza kuti ziwalo zina za thupi zimakhala zazikulu kwambiri (zimakula kwambiri) kapena zimakhala mawonekedwe osazolowereka.
Tsopano tiyeni tiwone chifukwa chake izi zimachitika. Chifukwa chachikulu cha izi ndi kusintha, kutanthauza, kusintha kwa majini, komwe kumatchedwa `PIK3CA` m'thupi lathu.
Mwachidule, thupi lathu lili ngati fakitale yayikulu. Pali malangizo omwe chilichonse mufakitale iyi chiyenera kuchitidwa bwino. `PIK3CA` ndi jini yofunika kwambiri yomwe imapereka malangizo otere. Ndi yomwe imauza maselo athu kuti, "Chabwino, tsopano mukugawa," "Tsopano mukukula," "Chabwino, tsopano nthawi yanu yatha, ifa."
Komabe, ngati kalata m'buku la malangizo la jini iyi ya `PIK3CA` ili yolakwika, ndiko kuti, ngati kusintha kwa majini kukuchitika, mauthenga omwe maselowo amalandira amasokonezeka. Kenako maselo ena amagawikana mofulumira kwambiri, kapena safa nthawi yomwe ayenera kufa. Pamenepo ndi pamene timawona kukula kosazolowereka m'malo omwe maselowo ali, ndiko kuti, m'malo monga khungu, mitsempha yamagazi, mafupa, minofu yamafuta ndi ubongo .
Pali mfundo yofunika kwambiri yomwe muyenera kukumbukira apa. BWINO si matenda omwe amapatsirana kuchokera kwa kholo kupita kwa mwana. Izi zikutanthauza kuti ngati muli ndi matendawa, mwana wanu sadzadwala, ndipo ngati mmodzi mwa ana anu anali nawo, ana ena sadzadwala. Kusintha kwa majini kumeneku sikumachitika mu selo iliyonse ya thupi la mwana, koma m'maselo ena okha. Choncho musachite mantha ndi izi mopanda chifukwa.
Matenda osiyanasiyana omwe amabwera pansi pa PROS
Nthawi zina madokotala amazindikira matenda mwachindunji ndi PROS. Nthawi zina, amatchula matenda enaake (syndrome) omwe ali pansi pa PROS. Zina mwa izi zalembedwa patebulo pansipa.
| Dzina la matenda (Syndrome) | Zinthu zazikulu ndi kufotokozera |
|---|---|
| Kuchuluka kwa fibroadipose | Pa vutoli, kukula kwambiri kwa minofu yamafuta, minofu ya ulusi, kapena mitsempha yamagazi kumayambitsa zotupa ngati zotupa m'miyendo kapena ziwalo zina za thupi. Pakapita nthawi, izi zimatha kukula ndikusokoneza kuyenda ndi kuyenda. |
| Matenda a cloves | Dzinali limachokera ku zilembo zoyambirira za zizindikiro. C - Congenital (yomwe ilipo kuyambira kubadwa), L - Lipomatous (yokhudzana ndi mafuta - ana ambiri amatha kuwona chinthu ngati chotupa chonenepa), O - Kukula kwambiri (kukula kwambiri), V - Kusokonekera kwa mitsempha yamagazi (mitsempha yamagazi yosazolowereka - monga zizindikiro zoberekera, mitsempha ya kangaude), E - Epidermal nevus (mtundu wa mole womwe umawonekera pakhungu), S - Msana/Chigoba (mavuto a msana kapena mafupa - mwachitsanzo kupweteka kwa msana). |
| Matenda a Megalencephaly-capillary malformation (MCAP) | Ubongo, mitsempha yamagazi, ndi nkhope zimakula kwambiri. Ana awa akhoza kukhala ndi kuchedwa kukula komanso zala zosaoneka bwino. |
| Matenda a Hemihyperplasia-multiple lipomatosis (HHML) | Kawirikawiri zimakhudza kukula kwa manja ndi miyendo. Zotupa zamafuta (lipomas) zomwe zimakula pang'onopang'ono komanso zopanda ululu zimapangika pansi pa khungu m'malo osiyanasiyana a thupi, makamaka kumbuyo, thunthu, miyendo, ndi zala. |
| Hemimegalencephaly | Pa vutoli, ubongo wonse kapena theka la ubongo umakula kuposa momwe zimakhalira masiku onse. Ana awa akhoza kukhala ndi khunyu, ziwalo, komanso kuchedwa kukula. |
| Lipomatosis yolowa m'maso | Kutupa kapena chotupa chopanda ululu pankhope. Izi nthawi zambiri zimachitika mbali imodzi yokha ya mutu. Nthawi zina gawo la lilime limatha kukula ndipo mafupa ndi mano zimatha kukhudzidwa. |
Kodi mankhwala ochizira izi ndi otani?
Palibe mankhwala a PROS pakadali pano. Komabe, pali njira zambiri zothanirana ndi vutoli komanso zizindikiro zake.
Dokotala wanu adzasankha chithandizo choyenera kwambiri kwa mwana wanu. Iye adzapanga zisankho izi atafufuza mosamala za vuto la mwana wanu ndikufunsa akatswiri osiyanasiyana (monga madokotala a opaleshoni, akatswiri a mitsempha). Nazi zina mwa njira zazikulu zothandizira:
- Opaleshoni: Opaleshoni ingalimbikitsidwe kuchotsa minofu yokulirapo, makamaka ngati kukulako kukulepheretsa mwana wanu kuyenda kapena kuchita zinthu za tsiku ndi tsiku, kukuika mphamvu pa ubongo, kapena kukufunika kukonza vuto monga scoliosis.
- Mankhwala: Dokotala wanu angakupatseni mankhwala oletsa zizindikiro zinazake, monga khunyu. Kafukufuku akuchitikanso pa mankhwala atsopano omwe amayang'ana ntchito ya jini ya PIK3CA.
Kodi tsogolo la mwana wanga lidzakhala bwanji?
Ichi ndi chimodzi mwa zinthu zomwe zimadetsa nkhawa kwambiri komanso zomwe zimadetsa nkhawa kholo lililonse. UBWINO ndi vuto lomwe limakhalapo kwa moyo wonse. Popeza zizindikiro zimasiyana kwambiri kuchokera kwa munthu ndi munthu, tsogolo la mwana limatha kusiyana molingana.
Izi zikutanthauza kuti ana ena akhoza kukhala moyo wabwinobwino popanda mavuto aakulu. Ena, makamaka ngati ubongo wakhudzidwa, amatha kukhala ndi kusiyana kwa kuphunzira komanso kuchedwa kukula.
Kuphatikiza apo, zapezeka kuti anthu ena omwe ali ndi PROS ali ndi chiopsezo chotenga khansa, chifukwa kusintha kwa majini komweku kwa PIK3CA kumapezekanso m'maselo a khansa mwa anthu omwe alibe PROS.
Musachite mantha ndi izi mosafunikira. Chofunika kwambiri ndikulankhulana momasuka za chiopsezochi ndi dokotala wanu. Kenako, mutha kupeza mayeso ofunikira panthawi yake ndikuwona ngati pali chiopsezo cha vutoli. Dokotala wanu nthawi zonse aziyang'anira thanzi la mwana wanu ndikupereka malangizo ofunikira.
Uthenga Wopita Nawo Kunyumba
- PROS ndi gulu la matenda omwe amayamba chifukwa cha kusintha kwa majini a `PIK3CA`. Izi sizichitika chifukwa cha kulakwitsa kwa makolo.
- Imeneyi si matenda obadwa nawo. Kungoti mmodzi mwa ana anu ali ndi matendawa sizikutanthauza kuti ana ena nawonso adzakhala ndi matendawa.
- Zizindikiro zimatha kusiyana kwambiri kuchokera kwa mwana aliyense. Zina zimatha kukhala ndi zotsatira zochepa, pomwe zina zimatha kukhala ndi mavuto akulu.
- Ngakhale kuti palibe mankhwala a PROS, zizindikiro zimatha kuchiritsidwa bwino ndi opaleshoni ndi mankhwala.
- Ndikofunikira kwambiri kulankhula momasuka komanso nthawi zonse ndi dokotala wanu za nkhawa kapena mantha aliwonse omwe muli nawo okhudza matenda a mwana wanu, chithandizo chake, ndi tsogolo lake.
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