Kodi Pali Chithandizo cha Cystic Fibrosis?

Zamkati

• Kafukufuku
• Mankhwala othandizira a Gene
• Ma modulators a CFTR
• Kupuma DNA
• Zochitika
• Zovuta
• Zovuta za kupuma
• Zovuta zam'mimba
• Zovuta zina
• Chiwonetsero
• Kuchita nawo
• Mabungwe ofufuza
• Mayesero azachipatala

Chidule

Cystic fibrosis (CF) ndi matenda obadwa nawo omwe amawononga mapapu anu komanso dongosolo logaya chakudya. CF imakhudza maselo amthupi omwe amatulutsa ntchofu. Timadzimadzi timene timapangira kuti thupi lizipaka mafuta ndipo nthawi zambiri amakhala ochepa thupi komanso oterera. CF imapangitsa madzi amthupi awa kukhala owuma komanso omata, zomwe zimawapangitsa kuti azikhala m'mapapu, mayendedwe ampweya, komanso m'mimba.

Ngakhale kupita patsogolo pakufufuza kwasintha kwambiri moyo ndi chiyembekezo cha moyo wa anthu omwe ali ndi CF, ambiri adzafunika kuthana ndi vutoli pamoyo wawo wonse. Pakadali pano, palibe mankhwala a CF, koma ofufuza akugwira ntchito yolimbana ndi imodzi. Dziwani zambiri za kafukufuku waposachedwa komanso zomwe anthu omwe ali ndi CF angapeze posachedwa.

Kafukufuku

Monga momwe ziliri zambiri, kafukufuku wa CF amathandizidwa ndi mabungwe odzipereka omwe amapeza ndalama, amapereka zopereka, ndikumenyera ndalama zothandizira ochita kafukufuku kuti apeze chithandizo. Nawa ena mwa malo ofunikira pakali pano.

Mankhwala othandizira a Gene

Zaka makumi angapo zapitazo, ofufuza adazindikira jini yomwe imayambitsa CF. Izi zidapangitsa chiyembekezo kuti chithandizo chobwezeretsa majini chitha m'malo mwa jini lopanda mphamvu mu vitro. Komabe, mankhwalawa sanagwirebe ntchito.

Ma modulators a CFTR

M'zaka zaposachedwa, ofufuza apanga mankhwala omwe amayang'ana zomwe CF imayambitsa, osati zisonyezo zake. Mankhwalawa, ivacaftor (Kalydeco) ndi lumacaftor / ivacaftor (Orkambi), ndi ena mwa mankhwala omwe amadziwika kuti cystic fibrosis transmembrane conductance regulator (CFTR) modulators. Gulu la mankhwalawa lakonzedwa kuti likhudze jini losinthika lomwe limayang'anira CF ndikupangitsa kuti ipange bwino madzi amthupi.

Kupuma DNA

Mtundu watsopano wamankhwala amtunduwu ungatenge komwe njira zamankhwala zam'mbuyomu zalephera. Njira yatsopanoyi imagwiritsa ntchito mamolekyulu okoka mpweya a DNA kuti apereke makope "oyera" amtunduwo kumaselo m'mapapu. M'mayeso oyambira, odwala omwe amagwiritsa ntchito mankhwalawa adawonetsa kusintha pang'ono kwa zizindikilo. Izi zikuwonetsa lonjezo lalikulu kwa anthu omwe ali ndi CF.

Palibe mwa mankhwalawa ndi mankhwala enieni, koma ndi njira zazikulu kwambiri zopezera moyo wopanda matenda anthu ambiri omwe ali ndi CF sanakhalepo nawo.

Zochitika

Masiku ano, anthu opitilira 30,000 akukhala ndi CF ku United States. Ndi matenda osowa - anthu pafupifupi 1,000 okha amapezeka chaka chilichonse.

Zinthu ziwiri zofunika kuzika pachiwopsezo zimapangitsa munthu kukhala ndi mwayi wopezeka ndi CF.

• Mbiri ya banja: CF ndi chibadwa chotengera. Mwanjira ina, imayendetsedwa m'mabanja. Anthu amatha kunyamula jini ya CF popanda kukhala ndi vutoli. Ngati onyamula awiri ali ndi mwana, mwanayo ali ndi mwayi umodzi mwa anayi wokhala ndi CF. Ndikothekanso kuti mwana wawo azinyamula jini ya CF koma alibe matendawa, kapena alibe jini.
• Mpikisano: CF imatha kupezeka mwa anthu amitundu yonse. Komabe, ndizofala kwambiri kwa anthu aku Caucasus omwe ali ndi makolo ochokera kumpoto kwa Europe.

Zovuta

Zovuta za CF nthawi zambiri zimakhala m'magulu atatu. Magulu awa ndi zovuta zake ndi monga:

Zovuta za kupuma

Izi si mavuto okhawo a CF, koma ndi ena mwa omwe amapezeka kwambiri:

• Kuwonongeka kwa ndege: CF imawononga mayendedwe anu. Vutoli, lotchedwa bronchiectasis, limapangitsa kupuma ndi kutuluka kukhala kovuta. Zimapangitsanso kuchotsa mapapo am'mimba okhwima, omata kukhala ovuta.
• Tizilombo tamphuno: CF nthawi zambiri imayambitsa kutupa ndi kutupa m'mbali mwa mphuno zanu. Chifukwa cha kutupa, kumera matupi (polyps) kumatha kukula. Tizilombo tating'onoting'ono timapangitsa kupuma kukhala kovuta kwambiri.
• Matenda omwe amapezeka pafupipafupi: Ntchentche zolimba, zomata ndi malo oberekera mabakiteriya. Izi zimawonjezera chiopsezo chanu chotenga chibayo ndi bronchitis.

Zovuta zam'mimba

CF imasokoneza magwiridwe antchito am'mimba. Izi ndi zina mwazizindikiro zofala kwambiri za kugaya m'mimba:

• Kutsekeka kwa m'matumbo: Anthu omwe ali ndi CF ali pachiwopsezo chotsekereza m'matumbo chifukwa chotupa komwe kumadza chifukwa cha matendawa.
• Kuperewera kwa zakudya m'thupi: Thupi lolimba, lolimba lomwe limayambitsidwa ndi CF limatha kulepheretsa kugaya chakudya ndikuletsa madzi amadzimadzi omwe amafunikira kuti mutenge michere isafike m'matumbo mwanu. Popanda madzi awa, chakudya chimadutsa m'thupi lanu osalowa. Izi zimakulepheretsani kupeza phindu lililonse lazakudya.
• Matenda a shuga: Mamina okhathamira, omata omwe amapangidwa ndi CF amabala kapamba ndipo amalepheretsa kugwira bwino ntchito. Izi zitha kulepheretsa thupi kutulutsa insulin yokwanira. Kuphatikiza apo, CF imatha kuteteza thupi lanu kuyankha insulini moyenera. Mavuto onsewa amatha kuyambitsa matenda ashuga.

Zovuta zina

Kuphatikiza pa zovuta zakupuma komanso kugaya chakudya, CF imatha kubweretsanso zovuta zina m'thupi, kuphatikiza:

• Nkhani zakubereka: Amuna omwe ali ndi CF nthawi zambiri amakhala osabereka. Izi ndichifukwa choti ntchofu zakuda nthawi zambiri zimatseka chubu chomwe chimanyamula madzi kuchokera ku prostate gland kupita kumayeso. Amayi omwe ali ndi CF atha kukhala ocheperako poyerekeza ndi amayi omwe alibe matendawa, koma ambiri amatha kukhala ndi ana.
• Osteoporosis: Matendawa, omwe amachititsa mafupa owonda, amapezeka kwa anthu omwe ali ndi CF.
• Kutaya madzi m'thupi: CF imapangitsa kukhala kovuta kukhala ndi mchere m'thupi lanu. Izi zitha kuyambitsa kuchepa kwa madzi m'thupi, komanso kusalinganika kwa ma elekitirodi.

Chiwonetsero

M'zaka makumi angapo zapitazi, malingaliro a omwe amapezeka ndi CF asintha kwambiri. Tsopano sizachilendo kuti anthu omwe ali ndi CF azikhala azaka zapakati pa 20 ndi 30. Ena amatha kukhala ndi moyo wautali.

Pakadali pano, njira zochiritsira za CF zikuwongolera zochepetsera vutoli komanso zovuta zamankhwala. Mankhwala amathandizanso kupewa zovuta ku matendawa, monga matenda a bakiteriya.

Ngakhale ndikufufuza kolonjeza komwe kukuchitika pakadali pano, chithandizo chamankhwala chatsopano cha CF sichitha zaka. Njira zatsopano zamankhwala zimafunikira zaka ndikufufuza ndi mayesero mabungwe olamulira asanalole zipatala ndi madotolo kuti azipereka kwa odwala.

Kuchita nawo

Ngati muli ndi CF, dziwani wina yemwe ali ndi CF, kapena akufuna kwambiri kupeza njira yothetsera vutoli, kutenga nawo mbali pothandizira kafukufuku ndikosavuta.

Mabungwe ofufuza

Kafukufuku wambiri wazithandizo za CF amathandizidwa ndi mabungwe omwe amagwira ntchito m'malo mwa anthu omwe ali ndi CF ndi mabanja awo. Kupereka kwa iwo kumathandizira kuwonetsetsa kuti kafukufuku wapitilira wa mankhwala. Mabungwe awa ndi awa:

• Cystic Fibrosis Foundation: CFF ndi bungwe lovomerezeka la Better Business Bureau lomwe limagwira ntchito yopezera ndalama zothandizira kafukufuku wazachipatala.
• Cystic Fibrosis Research, Inc.: CFRI ndi bungwe lachifundo lovomerezeka. Cholinga chake chachikulu ndikupereka ndalama pakufufuza, kupereka chithandizo ndi maphunziro kwa odwala ndi mabanja, ndikuwadziwitsa za CF.

Mayesero azachipatala

Ngati muli ndi CF, mutha kukhala oyenera kutenga nawo mbali pazoyeserera zamankhwala. Ambiri mwa mayeserowa amachitika kudzera muzipatala zofufuza. Ofesi ya dokotala wanu ikhoza kulumikizana ndi limodzi la maguluwa. Ngati satero, mutha kufikira limodzi la mabungwe omwe ali pamwambapa ndikulumikizidwa ndi loya yemwe angakuthandizeni kupeza mayeso omwe ali otseguka ndikulandira omwe akutenga nawo mbali.