Cystic Fibrosis uye Kubata

Zvemukati

• Migumisiro yekuzvitakura
• Kuedzwa panguva yekuzvitakura
• Matipi ehupenyu
• Idya zvakanaka
• Rovedza muviri
• Mamwe matipi ekuti ubate nhumbu ine hutano
• Mishonga yekudzivirira uine nhumbu
• Matipi ekubata pamuviri necystic fibrosis
• Tora woenda nazvo

Paunenge uine cystic fibrosis, zvichiri kugona kubata pamuviri uye kutakura mwana kusvika nguva. Zvisinei, iwe unoda kuongororwa zvakanyanya mukati memwedzi mipfumbamwe iyi kuti uone kuti iwe nemwana wako mudiki murambe mune hutano.

Kuti uzvipe mukana wakanakisa wekubata nhumbu inobudirira, ona chiremba ane njodzi huru usati waedza kubata pamuviri.

Iyi nyanzvi icha:

• ongorora hutano hwako
• sarudza kana zvakachengeteka kuti iwe ubate pamuviri
• kukutungamira kuburikidza nepamuviri

Iwe zvakare uchashanda padhuze nepulmonologist iyo inobata yako cystic fibrosis panguva yako yese yekuzvitakura.

Heano wongororo yezvaunotarisira paunotanga kuronga mhuri.

Migumisiro yekuzvitakura

Munguva yekuzvitakura, ako cystic fibrosis zviratidzo zvinogona kuwedzera. Mwana ari kukura anogona kuisa kumanikidza pamapapu ako uye kuita kuti zviome kufema. Kuzvimbirwa kunowanzoitika kune vakadzi vane cystic fibrosis.

Dzimwe cystic fibrosis nhumbu yekuzvitakura inosanganisira:

• Kukurumidza kutumira. Apa ndipo apo mwana wako paanozvarwa pamberi pevhiki makumi matatu nenomwe yekuzvitakura. Vacheche vanozvarwa vachiri vadiki vari panjodzi yematambudziko senge kufema kunetseka uye hutachiona.
• Gestational chirwere cheshuga. Apa ndipo apo amai vane shuga yakawanda muropa panguva yepamuviri. Chirwere cheshuga chinogona kukuvadza nhengo senge itsvo nemeso. Inogona zvakare kukonzera matambudziko mumwana ari kukura.
• Kuwedzera kweropa (hypertension). Uku kuwedzerwa kuramba nekuda kwemitsipa yeropa yakaoma. Kana kukwira kweropa kukwirira panguva yekuzvitakura, kunogona kudzikisa kuyerera kweropa kumwana wako, kunonoka kukura kwemwana wako, uye kunotungamira mukusununguka nguva isati yakwana.
• Kushomeka kwehutano. Izvi zvinogona kudzivirira mwana wako kuti akure zvakakwana mudumbu.

Kuedzwa panguva yekuzvitakura

Pane mukana wekuti iwe unogona kupfuudza cystic fibrosis kumwana wako. Kuti izvo zviitike, mumwe wako anodawo kutakura geni risina kujairika. Mumwe wako anogona kuongororwa ropa kana mate usati wabata pamuviri kuti utarise chinzvimbo chake.

Munguva yekuzvitakura, bvunzo mbiri idzi dzekusununguka dzinotarisa shanduko dzinowanzoitika pamajini. Vanogona kuratidza kana mwana wako angangove ane cystic fibrosis kana anotakura imwe yeiyo geni shanduko inozivikanwa kukonzera cystic fibrosis:

• Chorionic villus sampling (CVS) inoitwa pakati pegumi negumi nematatu masvondo epamuviri. Chiremba wako anoisa tsono refu, nhete mudumbu rako uye achabvisa sampuli yeturu yekuyedza. Neimwe nzira, chiremba anogona kutora sampuro achishandisa chubhu nhete yakaiswa mumuromo wechibereko uye nekukwezva zvinyoro.
• Amniocentesis inoitwa pakati pemasvondo gumi nemashanu kusvika makumi maviri ekubata kwako. Chiremba anoisa tsono yakatetepa, isina chinhu mudumbu rako uye inobvisa sampuli yeamniotic fluid kubva kumativi emwana wako. Lab inozoyedza iyo fluid ye cystic fibrosis.

Aya mabvunzo epamuviri anogona kutora zviuru zvishoma zvemadhora, zvinoenderana nekwako kwawakaita. Mazhinji zvirongwa zveinishuwarenzi zvehutano zvinovhara mutengo wevakadzi vanopfuura makore makumi matatu nemashanu uye kune vakadzi vane njodzi dzinozivikanwa.

Paunenge iwe uchinge waziva kuti mwana wako ane cystic fibrosis, iwe unogona kuita sarudzo nezve iro ramangwana rekubata kwako.

Matipi ehupenyu

Zvishoma zvekuronga uye nekuwedzera kutarisirwa panguva yako yekuzvitakura zvinobatsira kuverengera zvakanakisa mhedzisiro iwe nemwana wako. Hezvino zvinhu zvishoma zvaunogona kuita.

Idya zvakanaka

Cystic fibrosis inoita kuti zvive zvakaoma kuwana chikafu chakakodzera panguva yekuzvitakura. Paunenge uchidya kwemaviri, zvinotonyanya kukosha kuti uwane macalorie akakwana uye zvinovaka muviri.

Chiremba wako anogona kukurudzira kutanga kwako kubata nepamuviri nemuviri index index (BMI) yemakore makumi maviri nemaviri. Kana BMI yako iri yakaderera pane iyo, ungangoda kuwedzera koriori yako yaunodya usati wabata pamuviri.

Paunenge uchinge wava nepamuviri, iwe unozoda imwe yekuwedzera mazana matatu macalorie zuva nezuva. Kana usingakwanise kusvika panhamba iyoyo nechikafu chete, inwa zvinovaka muviri.

Dzimwe nguva kurwara kwakanyanya kwemangwanani kana cystic fibrosis kunogona kukudzivirira kubva pakuwana macalorie akakwana kusangana nezvinodiwa nemwana wako. Muchiitiko ichi, chiremba wako anogona kukurudzira kuwana kudya kwako kwakakwana mukati. Izvi zvinonzi parenteral chikafu.

Heano mamwe mashoma matipi ezvehutano ekuteedzera panguva yako yepamuviri:

• Inwa mvura yakawanda, idya michero nemiriwo, uye wedzera fiber kuchikafu chako kudzivirira kupatirwa.
• Ita shuwa kuti iwe unowana zvakakwana folic acid, iron, uye vhitamini D. Izvi zvinovaka muviri zvakakosha mukukura kwemwana wako. Dzimwe nguva vanhu vane cystic fibrosis havawani yakakwana yavo.

Rovedza muviri

Chiitwa chemuviri chakakosha kuita kuti muviri wako uve muchimiro chekuendesa uye nekuchengetedza mapapu ako akagwinya. Chiremba wako anogona kukurudzira kuti iwe uite zvakakosha zvekusimbisa mhasuru dzinokubatsira iwe kufema. Tarisa nechiremba wako kutanga kuti maitiro aunoita akachengeteka kwauri.

Zvakare, bvunza chiremba wezvekudya usati watanga chero chirongwa chitsva chekurovedza muviri. Iwe unoda hutano hwakakwana kuti utsigire yako yakawedzera koriori zvinodiwa.

Mamwe matipi ekuti ubate nhumbu ine hutano

Ona vanachiremba vako kazhinji. Ronga kushanya kwepamuviri nguva dzese nekusununguka kwako nenjodzi, asi zvakare ramba uchiona chiremba anobata cystic fibrosis yako.

Wongorora hutano hwako. Ramba uri pamusoro pemamiriro akaita seshuga uye chirwere chechiropa, kana uinazvo. Zvirwere izvi zvinogona kukonzeresa kubata pamuviri kana ukasazvibata.

Gara pamishonga yako. Kunze kwekunge chiremba wako akakuudza zvakananga kuti umise mushonga panguva yekuzvitakura, tora nguva zhinji kuti utarisire cystic fibrosis yako.

Mishonga yekudzivirira uine nhumbu

Mishonga chikamu chakakosha chekugadzirisa cystic fibrosis. Nhau dzakanaka ndedzekuti, mishonga yakawanda inobata mamiriro acho inoonekwa seyakachengeteka kumwana wako.

Nekudaro, kune mashoma madhiragi aunofanirwa kushandisa nekuchenjerera. Pane mukana mushoma wekuwedzera mukana wekuremara kana zvimwe zvinetso mumwana wako asati azvarwa. Zvinodhaka zvekutarisa zvinosanganisira:

• mishonga inorwisa mabhakitiriya akaita se ciprofloxacin (Cipro), clarithromycin, colistin, doxycycline (Oracea, Targadox), gentamicin (Gentak), imipenem (Primaxin IV), meropenem (Merrem), metronidazole (MetroCream, Noritate), rifampin (Rifadin), trimethoprim Bactrim), vancomycin (Vancocin)
• antifungal zvinodhaka senge fluconazole (Diflucan), ganciclovir (Zirgan), itraconazole (Sporanox), posaconazole (Noxafil), voriconazole (Vfend)
• antiviral zvinodhaka zvakadai seacyclovir (Zovirax)
• bisphosphonates kusimbisa mapfupa
• cystic fibrosis zvinodhaka senge ivacaftor (Kalydeco) uye lumacaftor / ivacaftor (Orkambi)
• ranitidine (Zantac) kurapa chirungurira uye gastroesophageal reflux
• kuisa mishonga yekudzivirira kurambwa, senge azathioprine (Azasan), mycophenolate
• ursodiol (URSO Forte, URSO 250) kuputsa matombo

Taura nachiremba wako kana ukatora chero ipi yemishonga iyi. Iwe unofanirwa kuyera mabhenefiti uye njodzi dzekugara pane chero mishonga inogona kukonzera matambudziko panguva yekuzvitakura. Chiremba wako anogona kunge achikwanisa kukuchinjira kune mumwe mushonga kusvikira waendesa.

Matipi ekubata pamuviri necystic fibrosis

Vazhinji vakadzi vane chirwere ichi vanogona kutora nhumbu, asi zvinogona kutora chinguva chakareba kupfuura zvakajairwa. Cystic fibrosis inowedzera mamasi mumuviri wese - kusanganisira maburi mumuromo wechibereko. Mukobvu wakakora unoita kuti zviome kuti mbeu yemurume ishambire mumuromo wechibereko nekusangana nezai.

Kushomeka kwehutano kunogona zvakare kudzivirira iwe kubva pakubuda mazai nguva dzose. Nguva dzese paunovhura, ovary yako inoburitsa zai rekusangana. Pasina zai munzvimbo mwedzi wega wega, unogona kusakwanisa kubata pamuviri nyore.

Kana iwe wakamboedza kwemwedzi yakati kuti kuti ubate pamuviri, asi usati wabudirira, taura nenyanzvi yekubereka. Mishonga yekuwedzera yako kugadzirwa kwezai kana kubatsira matekinoroji ekubereka senge in-vitro fetiraiza inogona kuvandudza mikana yako yekubata.

Varume vane cystic fibrosis vanoshaya kana vane kuvhara mukati mutubhu inotakura urume kubva pachigamba kuenda kuurethra yekubuda. Nekuda kweizvi, vazhinji havagone kubata zvakasununguka.

Ivo newavo mudiwa vachada IVF kubata pamuviri. Munguva yeIVF, chiremba anobvisa zai kubva mumukadzi uye urume kubva mumurume, anozvibatanidza mundiro yemurabhoritari, uye oendesa "embryo" muchibereko chemukadzi.

Usati watanga IVF, taura nachiremba anobata cystic fibrosis yako. Iwe ungatofanira kugadzirisa kurapwa kwako, nekuti cystic fibrosis inogona kukanganisa kunwiwa kwehomoni inodiwa IVF.

Tora woenda nazvo

Kuva necystic fibrosis hakufanirwe kukutadzisa kutanga mhuri. Kuva nepamuviri kunogona kungotora gadziriro shoma uye kutarisirwa.

Paunenge iwe ukava nepamuviri, shanda padhuze neese ari maviri ane njodzi yekuzvimba uye chiremba anobata yako cystic fibrosis. Iwe uchazoda kutarisirwa kwakanaka panguva yako yese yekuzvitakura kuti uve nechokwadi cheakanakisa mhedzisiro iwe nemwana wako.