Wakamboona here kuti chikamu chimwe chemuviri wemwana wako, zvichida ruoko, gumbo, kana munwe, chakakura zvisingawanzoitiki kana tichienzanisa nemuviri wake wese? Kana kuti wakamboona chimwe chinhu chinoshamisa, senge chikosoro chikuru paganda rake kana nzvimbo yakamanikana yetsinga dzeropa? Zvakajairika kuti chero mubereki anzwe kunetseka paanoona chimwe chinhu chakadai. Nhasi tiri kutaura nezveboka rezvirwere zvisingawanzoitiki zvinogona kukonzera zvinhu izvi. Zvinonzi PROS, kana kuti PIK3CA-Related Overgrowth Spectrum.
Ngatinzwisisei chaizvo kuti ZVINHU ZVAKANAKA uye PIK3CA chii.
Chekutanga, PROS haisi chirwere chimwe chete. Imhando yezvirwere zvakasiyana-siyana. Zvirwere izvi zvese zvine chinhu chimwe chete chakafanana. Kureva kuti, zvimwe zvikamu zvemuviri zvinokura zvakanyanya (zvichikura zvakanyanya) kana kuti zvinokura kuita chimiro chisina kujairika.
Ngationei kuti sei izvi zvichiitika. Chikonzero chikuru cheizvi kuchinja, ndiko kuti, kuchinja, mujini rinonzi `PIK3CA` mumuviri wedu.
Zvichitaurwa zviri nyore, muviri wedu wakafanana nefekitori hombe. Pane mirairo yekuti zvese zviri mufekitori iyi zvinofanirwa kuitwa nemazvo. `PIK3CA` ijini rinokosha rinopa mirairo yakadaro. Ndiro rinoudza masero edu kuti, "Zvakanaka, zvino wava kupatsanurana," "Zvino wava kukura," "Zvakanaka, zvino nguva yako yapera, ifa."
Zvisinei, kana tsamba iri mubhuku remirayiridzo yejini iri re'PIK3CA' isina kururama, kureva kuti, kana shanduko ikaitika, mashoko anogamuchirwa nemasero iwayo anovhiringidzika. Zvadaro mamwe masero anopatsanuka nekukurumidza, kana kuti haafe panguva yaanofanira kufa. Ndipo patinoona kukura kusingawanzoitiki munzvimbo dzine masero iwayo, kureva munzvimbo dzakadai seganda, mitsipa yeropa, mapfupa, mafuta neuropi .
Pane chinhu chakakosha chaunofanira kurangarira pano. ZVINHU ZVAKANAKA hachisi chirwere chinopfuudzwa kubva kumubereki kuenda kumwana. Izvi zvinoreva kuti kana uine chirwere ichi, mwana wako haazochikuriri, uye kana mumwe wevana vako akachikuriri, vamwe vana havazochikuriri. Kuchinja kwemajini uku hakuitiki musero rega rega remuviri wemwana, asi mune mamwe masero chete. Saka usatya izvi zvisina kufanira.
Zvirwere zvakasiyana-siyana zvinouya pasi pePROS
Dzimwe nguva vanachiremba vanoongorora chirwere zvakananga nePROS. Dzimwe nguva, vanodudza chirwere chaicho (syndrome) chinowira pasi pePROS. Zvimwe zvacho zvakanyorwa mutafura iri pazasi.
| Zita rechirwere (Syndrome) | Zvinhu zvikuru uye tsananguro |
|---|---|
| Kuwanda kwemafuta mu fibroadipose | Mumamiriro ezvinhu aya, kukura zvakanyanya kwemafuta, fibrous tissue, kana tsinga dzeropa zvinokonzera mapundu akaita semapundu kuumbwa mumakumbo kana dzimwe nhengo dzemuviri. Nekufamba kwenguva, izvi zvinogona kukura uye kukanganisa kufamba nekufamba. |
| chirwere cheCLOVES | Zita iri rinobva pamabhii ekutanga ezviratidzo. C - Congenital (yavapo kubva pakuzvarwa), L - Lipomatous (yakabatana nemafuta - vana vazhinji vanogona kuona chimwe chinhu chakaita sebundu rine mafuta), O - Kukura zvakanyanya (kukura zvakanyanya), V - Kukanganisika kwetsinga dzeropa (tsinga dzeropa dzisina kujairika - dzakadai semavanga ekuzvarwa, tsinga dzedandemutande), E - Epidermal nevus (rudzi rwemota inoonekwa paganda), S - Spinal/Skeletal (matambudziko emusana kana mapfupa - semuenzaniso kurwadziwa kwemusana). |
| Chirwere cheMegalencephaly-capillary malformation (MCAP) | Uropi, mitsipa yeropa, uye chimiro chechiso zvinokura zvakanyanya. Vana ava vanogona kunge vaine kunonoka kukura uye minwe isina chimiro chakajairwa. |
| Hemihyperplasia-multiple lipomatosis (HHML) syndrome | Zvinowanzo kukanganisa kukura kwemaoko nemakumbo. Matumbu ane mafuta anokura zvishoma nezvishoma uye asingarwadzi (lipomas) anoumbwa pasi peganda munzvimbo dzakasiyana dzemuviri, kunyanya kumusana, mutumbi, makumbo, neminwe. |
| Hemimegalencephaly | Mumamiriro ezvinhu aya, uropi hwese kana hafu yeuropi hunokura kupfuura zvakajairika. Vana ava vanogona kusangana nepfari, kuoma mitezo, uye kunonoka kukura. |
| Lipomatosis inopinda muchiso | Kuzvimba kana kukura kusingarwadzi pachiso. Izvi zvinowanzoitika kudivi rimwe chete remusoro. Dzimwe nguva chikamu cherurimi chinogona kukura uye mapfupa nemazino zvinogona kukanganiswa. |
Ndezvipi zvinorapwa izvi?
Hapana mushonga weZVINHU ZVAKANYANYA KUSHANDISWA pari zvino. Zvisinei, kune nzira dzakawanda dzekugadzirisa chirwere ichi nezviratidzo zvacho.
Chiremba wenyu ndiye achasarudza mushonga wakakodzera mwana wenyu. Iye ndiye achaita sarudzo idzi mushure mekunyatsoongorora mamiriro emwana wenyu uye kubvunza nyanzvi dzakasiyana-siyana (semuenzaniso, vanachiremba vekuvhiya, vanachiremba vetsinga). Heano mamwe emhando huru dzekurapa:
- Kuvhiyiwa: Kuvhiyiwa kunogona kukurudzirwa kubvisa nyama yakakurisa, kunyanya kana kukura kwacho kuchikanganisa kugona kwemwana wako kufamba kana kuita mabasa ezuva nezuva, kuri kuisa kumanikidzwa pauropi, kana kuchidikanwa kugadzirisa chirwere chakadai se scoliosis.
- Mishonga: Chiremba wako anogona kukupa mishonga yekudzora zviratidzo zvakasiyana-siyana, zvakaita sepfari. Tsvagiridzo iri kuenderera mberiwo pamishonga mitsva inotarisa mashandiro ejini rePIK3CA.
Remangwana remwana wangu richave rakaita sei?
Ichi chimwe chezvinhu zvinonyanya kutyisa mubereki chero upi zvake. ZVAKANAKA chirwere chinogara kwenguva refu. Sezvo zviratidzo zvichisiyana zvikuru kubva pamunhu kusvika pamunhu, ramangwana remwana rinogona kusiyana zvichienderana.
Izvi zvinoreva kuti vamwe vana vanogona kurarama hupenyu hwakajairika vasina matambudziko makuru. Vamwe, kunyanya kana uropi hwakanganiswa, vanogona kusangana nemisiyano yekudzidza uye kunonoka kukura.
Pamusoro pezvo, zvakaonekwa kuti vamwe vanhu vane PROS vane mukana wekuti vabatwe nekenza, nekuti kuchinja kwemajini uku kwePIK3CA kunowanikwawo mumasero ekenza muvanhu vasina PROS.
Usatya izvi zvisina kufanira. Chinhu chakakosha ndechekutaura pachena nezvenjodzi iyi nachiremba wako. Zvadaro, unogona kuita bvunzo dzinodiwa nenguva uye kuona kana paine njodzi yemamiriro ezvinhu akadaro. Chiremba wako acharamba achitarisa mamiriro emwana wako uye achikupa gwara rinodiwa.
Mharidzo Yekuenda Nayo Kumba
- PROS iboka rezvirwere zvinokonzerwa nekuchinja kwemajini `PIK3CA`. Izvi hazvikonzerwi nemhosva yevabereki.
- Ichi hachisi chirwere chinogara nhaka. Kungoti mumwe wevana vako ane chirwere ichi hazvirevi kuti vamwe vana vachava nachowo.
- Zviratidzo zvinogona kusiyana zvikuru kubva pamwana kusvika pamwana. Zvimwe zvinogona kunge zvisina kunyanya kuipa, nepo zvimwe zvingave nematambudziko akakomba.
- Kunyange hazvo pasina mushonga weZVINHU ZVAKANYANYA KUBUDIRA, zviratidzo zvinogona kurapwa zvakanaka nekuvhiyiwa nemishonga.
- Zvakakosha zvikuru kutaura pachena uye nguva dzose nachiremba wako nezvechero zvinokunetsa kana kutya kwauinako pamusoro pemamiriro emwana wako, kurapwa kwake, uye remangwana rake.
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