Dzinali ndi lovuta kuliwerenga, sichoncho? "Lymphangioleiomyomatosis". Palibe vuto, tiyeni tingolitcha kuti LAM . Ili ndi matenda osowa kwambiri m'mapapo omwe amakhudza akazi kwambiri. N'zomveka kuchita mantha mukamva dzina lotere. Koma musadandaule. Munkhaniyi, tikambirana za LAM, chifukwa chake imachitika, komanso mankhwala omwe alipo m'njira yosavuta komanso yochezeka.
Kodi LAM imatanthauza chiyani?
Mwachidule, LAM ndi pamene maselo osazolowereka a minofu mkati mwa mapapo anu amayamba kukula mosalamulirika. Monga zotupa zazing'ono. Maselo amenewa amasonkhana pamodzi ndikupanga zinthu zazing'ono ngati thovu zotchedwa cysts m'mapapo anu. Pakapita nthawi, pamene zotupazi zimakula, zimatha kuwononga minofu yathanzi ya mapapo ndikupangitsa kuti zikhale zovuta kupuma.
Vutoli silimangokhudza mapapo okha. Nthawi zina, zotupa zimathanso kufalikira mu impso ndi m'thupi. Chifukwa chachikulu cha izi ndi kusintha kwa majini omwe amalamulira kukula kwa maselo m'thupi lathu.
Ndikofunikira kwambiri kukumbukira kuti matendawa amapezeka kwambiri mwa akazi azaka zapakati pa 20 ndi 40, kutanthauza pakati pa kutha msinkhu ndi kusamba. Chifukwa chake, madokotala amakhulupirira kuti mahomoni otchedwa estrogen amagwirizana ndi vutoli.
Pali mitundu iwiri ikuluikulu ya ma LAM.
Matenda a LAM akhoza kugawidwa m'magulu awiri akuluakulu, kusiyana pang'ono pakati pa awiriwa.
| Mtundu wa LAM | Kufotokozera kosavuta |
|---|---|
| TSC-LAM | Uwu ndi mtundu wa LAM womwe umapezeka mwa akazi omwe ali ndi vuto la majini lotchedwa tuberous sclerosis. Izi zikutanthauza kuti limachitika ngati gawo la vuto lina lachipatala. |
| LAM yosakhazikika | Mtundu uwu umayamba chifukwa cha kusintha kwa majini mwachisawawa (mutation) komwe kumachitika nthawi ya moyo. Sikobadwa nako. Choncho ngati muli ndi mtundu uwu, simuyenera kuda nkhawa kuti ana anu apereka matendawa. |
Kodi zizindikiro za matenda a LAM ndi ziti?
Popeza zizindikiro za LAM zimafanana kwambiri ndi matenda ena ofala m'mapapo, monga mphumu, nthawi zina zimatenga nthawi kuti zidziwike. Izi ndi zizindikiro zazikulu.
- Kuvuta kupuma (kupuma movutikira): Ngakhale kuti poyamba sizikuoneka, kusapeza bwino kumeneku kumatha kuwonjezeka pakapita nthawi. Kungaphatikizepo kutopa ngakhale mukuyenda mtunda waufupi, kapena kupuma movutikira mukakwera masitepe.
- Kupuma movutikira: Phokoso lofewa lochokera mkati mwa chifuwa.
- Kupweteka pachifuwa: Pakhoza kukhala kupweteka pachifuwa mwadzidzidzi komanso koopsa.
- Chifuwa: Chifuwa chouma chosatha.
- Kutsokomola magazi kapena 'chyle': Chyle ndi madzi a mucous omwe amachokera m'mimba mwathu. Ali ndi mtundu ngati mkaka.
N’chifukwa chiyani LAM iyi imachitika? Kodi chifukwa chake n’chiyani?
Monga tanenera kale, izi zimachitika chifukwa cha kusintha kwa majini. Pali mitundu iwiri ya majini m'thupi lathu yotchedwa TSC1 ndi TSC2 . Izi zili ngati 'oteteza' omwe amalamulira kukula kwa maselo m'thupi lathu. Amatchedwa majini a 'chotupa'. Izi zikutanthauza kuti, ntchito ya majini awa ndikuletsa maselo kuti asagawane mosafunikira ndikupanga zotupa.
Munthu amene ali ndi LAM amakhala ndi vuto, kapena kusintha kwa majini, monga TSC1 kapena TSC2. Kenako 'zoteteza' zimenezo sizigwira ntchito bwino. Zotsatira zake, maselo osalala a minofu amayamba kugawikana mosalamulirika, ndikupanga mitundu ya zotupa zomwe tinakambirana kale.
- Ma cysts a m'mapapo
- Matenda a impso (angiomyolipomas)
- Matenda a dongosolo la lymphatic
Kodi ndi mavuto otani omwe angayambitse matendawa?
Vuto lofala komanso loopsa la LAM ndi mapapu ogwa (pneumothorax) . Tangoganizirani za chiphuphu chonga thovu m'mapapo chomwe chimaphulika mwadzidzidzi, zomwe zimapangitsa kuti mpweya utuluke m'malo omwe ali pakati pa mapapo ndi khoma la pachifuwa. Izi zimapangitsa kuti mapapo agwe. Azimayi oposa theka omwe ali ndi LAM adzakumana ndi vutoli kamodzi pa moyo wawo. Nthawi zambiri, LAM imapezeka koyamba mapapo ogwa.
Pakhoza kukhala zovuta zina:
- Kusonkhanitsa kwa madzi a 'chylous' kuzungulira mapapo (chylothorax)
- Madzi ena ozungulira mapapo (pleural effusion)
- Kutsekeka kwa dongosolo la lymphatic
Kodi dokotala amazindikira bwanji LAM?
Pambuyo pomvetsera zizindikiro zanu ndikukuyesani, ngati dokotala akukayikira kuti muli ndi matendawa, adzalamula mayeso angapo kuti atsimikizire.
| Mayeso | Mumachita chiyani ndi izi? |
|---|---|
| Mayeso a ntchito ya mapapo | Imayesa momwe mapapu anu amagwirira ntchito komanso kuchuluka kwa mpweya womwe mungalowe ndi kutuluka. |
| Kuchuluka kwa Kuthamanga kwa Mtima | Amamangirira chinthu chonga chogwirira chala chanu ndikuyang'ana kuchuluka kwa mpweya m'magazi anu. |
| Kujambula (kujambula) | Kujambula kwa CT , makamaka HRCT (High-Resolution CT) , kumatha kuona bwino ma cysts ang'onoang'ono m'mapapo. |
| Kuyezetsa magazi kwa VEGF-D | VEGF-D ndi puloteni. Nthawi zambiri milingo ya puloteniyi imakhala yambiri m'magazi a anthu omwe ali ndi LAM. Izi zimathandiza kwambiri pozindikira matendawa. |
| Kufufuza kwa mapapo | Ngati mayeso ena sangathe kutsimikizira matendawa, chidutswa chaching'ono cha minofu chimatengedwa kuchokera m'mapapo ndikuwunikidwa pogwiritsa ntchito maikulosikopu. Izi zitha kuchitika pogwiritsa ntchito njira monga bronchoscopy kapena VATS . |
Kodi mankhwala a LAM ndi otani?
Choyamba, palibe mankhwala a LAM pakadali pano.Koma musadandaule. Tsopano pali mankhwala othandiza omwe angathandize kuchepetsa matendawa, kuchepetsa zizindikiro, komanso kupewa kuti asakule kwambiri.
Chithandizo chachikulu ndi mankhwala otchedwa sirolimus . Amatchedwanso rapamycin. Mankhwalawa amagwira ntchito poletsa kukula kwa maselo osazolowereka a minofu. Izi zimatha kusunga matendawa kukhala olimba ndikuchepetsa zotupa mu impso ndi lymphatic system.
Kuonjezera apo, malingana ndi matenda anu, dokotala wanu angakulangizeni njira zina monga:
- Chithandizo cha okosijeni: Ngati mpweya m'magazi uli wochepa.
- Mankhwala opumira a bronchodilator: Amachepetsa kupuma movutikira.
- Kubwezeretsa mapapo: Maseŵero olimbitsa thupi ndi malangizo okhudza moyo omwe amalimbitsa mapapo.
- Kuika mapapo: Njira yomaliza pamene matendawa ndi oopsa kwambiri ndipo sangathe kuthetsedwa ndi mankhwala ena.
Chofunika: Sirolimus ingayambitse mavuto ena, monga kuwonongeka kwa impso komanso chiopsezo chowonjezeka cha matenda opatsirana. Chifukwa chake, kambiranani ndi dokotala wanu za ubwino ndi kuipa kwa mankhwalawa musanayambe kumwa.
Zinthu zofunika kudziwa mukakhala ndi LAM
Kulephera kugwira ntchito bwino kwa m'mapapo ndi vuto la nthawi yayitali. Chifukwa chake, muyenera kugwira ntchito limodzi ndi dokotala wa mapapo. Kukula kwa matendawa, ndiko kuti, liwiro lomwe matendawa amakulira, kumasiyana malinga ndi munthu ndi munthu. Zimatengera zinthu zingapo:
- Zimatengera mtundu wa LAM womwe muli nawo.
- Zaka zanu (kwa anthu ena, matendawa amasiya kukulirakulira akamaliza kusamba).
- Momwe thupi lanu limayankhira chithandizo.
Musaope kuikidwa mapapo. Anthu ambiri (pafupifupi 64%) sadzafunika kuikidwa mapapo mpaka zaka 20 kapena kuposerapo atapezeka ndi matendawa. Chifukwa cha mankhwala atsopano, nthawi yotsala ya moyo wa anthu omwe ali ndi LAM tsopano yakwera kwambiri. Anthu opitilira 90% adakali ndi moyo zaka 10 atapezeka ndi matendawa.
Nthawi yoti mupemphe upangiri wa dokotala
Mukakhala ndi matenda ngati amenewa, ndikofunikira kwambiri kusamalira thupi lanu.
| Ngati muli ndi zizindikiro izi, onani dokotala wanu: | |
| |
| Pitani ku ETU (Emergency Treatment Unit) nthawi yomweyo ngati muli ndi zizindikiro izi: | |
|
Kodi LAM ndi khansa?
Vutoli ndi la anthu ambiri. Nthawi zambiri LAM si khansa . Komabe, ili ndi zizindikiro zina zofanana ndi khansa. Mwachitsanzo, maselo amatha kuoneka ngati afalikira kuchokera mbali zina za thupi kupita ku mapapo ndi impso. Komabe, akayang'aniridwa ndi maikulosikopu, maselowa samawoneka ngati maselo a khansa, koma ngati maselo abwinobwino. Komanso, safalikira ku ziwalo monga chiwindi kapena ubongo.
Ndizachibadwa kumva ngati nthaka yagwetsedwa pansi panu mukazindikira kuti muli ndi matenda ngati awa kwa moyo wanu wonse. Koma simuli nokha. Ndi chithandizo cha dokotala wanu, banja lanu, ndi anzanu, mutha kuthana ndi vutoli.
Uthenga Wopita Nawo Kunyumba
- LAM ndi matenda osowa kwambiri m'mapapo omwe amapezeka kawirikawiri mwa akazi.
- Zizindikiro zazikulu ndi kuvutika kupuma, chifuwa, ndi kupweteka pachifuwa.
- Izi zimachitika chifukwa cha kusintha kwa majini, osati chifukwa cha inu.
- Ngakhale kuti palibe mankhwala athunthu, matendawa amatha kuthetsedwa bwino ndi mankhwala monga sirolimus.
- Pitirizani kukaonana ndi katswiri wa kupuma nthawi zonse.
- Pazifukwa zadzidzidzi monga kupweteka kwambiri pachifuwa kapena kuvutika kupuma kwambiri, pitani ku ETU nthawi yomweyo.
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