Cystic Fibrosis Inotakura: Izvo Zvaunofanirwa Kuziva

Zvemukati

• Mwana wangu anozozvarwa aine cystic fibrosis here?
• Ko cystic fibrosis inokonzeresa kushaya mbereko?
• Ndichava nezviratidzo here kana ndiri mutakuri?
• Zvakajairika sei cystic fibrosis vatakuri?
• Kune kune kurapwa kwecystic fibrosis?
• Outlook
• Ndingaedzwa sei neCF?

Chii chinonzi cystic fibrosis inotakura?

Cystic fibrosis chirwere chakagarwa nhaka chinokanganisa matenhere anoita gumha nedikita. Vana vanogona kuzvarwa vaine cystic fibrosis kana mubereki wega wega akatakura rimwe jeni rakakanganisika rechirwere. Mumwe munhu ane yakajairwa CF geni uye imwe yakashata CF jeni inozivikanwa secystic fibrosis inotakura. Iwe unogona kuva anotakura uye usingave nechirwere iwe pachako.

Vakadzi vazhinji vanoona kuti vatakuri pavanenge vava, kana kuti vari kuedza kuve nepamuviri. Kana mumwe wavo ariwo mutakuri, mwana wavo anogona kuzvarwa aine chirwere.

Mwana wangu anozozvarwa aine cystic fibrosis here?

Kana iwe nemumwe wako muri vaviri vatakuri, iwe ungangoda kuda kunzwisisa kuti zvingangoita sei kuti mwana wako azvarwe aine cystic fibrosis. Kana vatakuri vaviri veCF vaine mwana, pane 25 muzana mukana wekuti mwana wavo azvarwe aine chirwere uye makumi mashanu muzana mukana wekuti mwana wavo ave mutakuri weCF gene mutation, asi vasina chirwere ivo pachavo. Mumwe muvana vana haazove anotakura kana chirwere ichi, nekudaro kutyora cheni yenhaka.

Vazhinji vanotakura vakaroorana vanosarudza kuita genetisheni yekuyera kuongororwa pamazai avo, anonzi preimplantation genetic diagnostic (PGD). Muedzo uyu unoitwa usati wabata pamuviri pemazai akawanikwa kuburikidza ne in vitro fertilization (IVF). MuPGD, sero rimwe kana maviri anotorwa kubva muchibereko chimwe nechimwe uye kuongororwa kuti aone kana mwana achizotevera:

• vane cystic fibrosis
• uve mutakuri wechirwere
• isina geni rakaremara zvachose

Kubviswa kwemasero hakukanganise mazai aya. Kana iwe uchinge waziva ruzivo urwu nezve ako mazai, iwe unogona kusarudza kuti ndeipi yekumisikidza muchibereko chako mune tarisiro yekuti nhumbu ichaitika.

Ko cystic fibrosis inokonzeresa kushaya mbereko?

Vakadzi vari vatakuri veCF havawani nyaya dzekushaya mbereko nekuda kwayo. Vamwe varume vanotakura vane imwe mhando yekusabereka. Uku kushaya mbereko kunokonzerwa nekodhi kanoshaikwa, kanonzi vas deferens, kanotakura urume kubva mumachende kuenda muhurume. Varume vane chirwere ichi vane sarudzo yekuti mbeu yavo ipore nekuvhiyiwa. Urume hunogona kuzoshandiswa kuisa mumwe wavo kuburikidza nemushonga unonzi intracytoplasmic sperm injection (ICSI).

MuICSI, urume humwe chete hunobayiwa muzai. Kana kusangana kukaitika, iyo nhumbu inoiswa muchibereko chemukadzi, kuburikidza ne vitro fertilization. Sezvo vasiri vese varume vari vatakuri veCF vane nyaya dzekushaya mbereko, zvakakosha kuti vese vaviri varoorwe kuti vaongorore jini rakakanganisika.

Kunyangwe kana mose muri vatakuri, munogona kuva nevana vane hutano.

Ndichava nezviratidzo here kana ndiri mutakuri?

Vazhinji vanotakura CF vane asymptomatic, zvichireva kuti havana zviratidzo. Anenge mumwe chete mu31 maAmerican mutakuri asina chiratidzo cheakaremara CF jini. Vamwe vatakuri vanoona zviratidzo, izvo zvinowanzo nyoro. Zviratidzo zvinosanganisira:

• zvinetso zvekufema, senge bronchitis uye sinusitis
• chirwatata

Zvakajairika sei cystic fibrosis vatakuri?

MaCystic fibrosis anotakura anowanikwa mune ese madzinza. Zvinotevera fungidziro dzeCF gene mutation carriers muUnited States nedzinza:

• Varungu: mumwe mu29
• Hispanics: imwe mu46
• Vatema vanhu: mumwe mu65
• Vanhu vokuAsia vokuAmerican: mumwe mu90

Zvisinei nedzinza rako kana uine nhoroondo yemhuri yecystic fibrosis, unofanirwa kuongororwa.

Kune kune kurapwa kwecystic fibrosis?

Iko hakuna mushonga wecystic fibrosis, asi sarudzo dzemararamiro, kurapwa, uye mishonga inogona kubatsira vanhu vane CF kurarama hupenyu hwakazara, kunyangwe paine matambudziko avanotarisana nawo.

Cystic fibrosis inonyanya kukanganisa mweya wekufema uye nzira yekugaya. Zviratidzo zvinogona kutenderera mukuomarara uye kuchinja nekufamba kwenguva. Izvi zvinoita kuti kudiwa kwekuratidzira kurapwa uye kuongorora kubva kune vezvekurapa kwakanyanya kukosha. Zvakakosha kuchengetedza majekiseni kumusoro-uye kuchengetedza nzvimbo isina utsi.

Kurapa kunowanzo tarisa pane:

• kuchengetedza kudya kwakakwana
• kudzivirira kana kurapa ura hwekuvhara
• kubvisa mucus kubva mumapapu
• kudzivirira hutachiona

Vanachiremba vanowanzopa mishonga yekuzadzisa zvinangwa zvekurapa, zvinosanganisira:

• mishonga inodzivirira uye yekurapa hutachiona, kunyanya mumapapu
• muromo wepancreatic enzymes kubatsira mukugaya
• mamasi-kutetepa mishonga kutsigira kusunungura uye kubvisa mamusoni kubva mumapapu kuburikidza nekukosora

Kumwe kurapwa kwakajairika kunosanganisira bronchodilators, ayo anobatsira kuti nzira dzemhepo dzivhurike, uye kurapwa kwechipfuva. Kudyisa machubhu dzimwe nguva kunoshandiswa husiku hwese kuti ubatsire kuvimbisa kukwana kwakaringana kwekoriori.

Vanhu vane zviratidzo zvakakomba vanowanzobatsirwa kubva pakuvhiya, senge nasal polyp kubviswa, ura hwekuvhara maronda, kana kuisa mapapu.

Mishonga yeCF inoramba ichivandudza uye pamwe chete nazvowo hunhu uye hurefu hwehupenyu kune avo vanazvo.

Outlook

Kana iwe uri kutarisira kuve mubereki uye ukaona uri mutakuri, zvakakosha kuti urangarire kuti une sarudzo uye kutonga pamusoro pemamiriro acho.

Ndingaedzwa sei neCF?

IAmerican Congress of Obstetricians uye Gynecologists (ACOG) inokurudzira kupa vatakuri kuongorora kwevakadzi vese nevarume vanoshuvira kuve vabereki. Mutakuri kuongorora ndeye nyore maitiro. Iwe unozofanirwa kupa chero reropa kana saliva sampuro, iyo inowanikwa kuburikidza nemuromo swab. Muenzaniso uyu uchaendeswa kubazi kuti uongororwe uye upe ruzivo nezvemajini ako (DNA) uye unoona kana uine shanduko yeCF gene.