ICystic Fibrosis yenethiwekhi: Into ekufuneka uyazi

Umxholo

• Ngaba umntwana wam uza kuzalwa enecystic fibrosis?
• Ngaba i-cystic fibrosis ibangela ukungachumi?
• Ngaba ndiza kuba naziphi na iimpawu ukuba ndingumphathi?
• Ziqheleke kangakanani izithwali zecystic fibrosis?
• Ngaba lukhona unyango lwecystic fibrosis?
• Imbonakalo
• Ndingavavanywa njani i-CF?

Yintoni umphathi wecystic fibrosis?

ICystic fibrosis sisifo esizuzwe njengelifa esichaphazela amadlala enza i-mucus kunye nokubila. Abantwana banokuzalwa benesifo se-cystic fibrosis ukuba umzali ngamnye uphethe uhlobo olunye olugwenxa kwesi sifo. Umntu onohlobo olunye oluqhelekileyo lweCF kunye noluhlobo olunye olungalunganga lweCF waziwa ngokuba ngumthuthi wecystic fibrosis. Unokuba ngumntu ophetheyo kwaye awunaso isifo ngokwakho.

Abasetyhini abaninzi bafumanisa ukuba bangabathwali xa beba, okanye bezama ukukhulelwa. Ukuba iqabane labo nalo liphetheyo, umntwana wabo unokuzalwa enesi sifo.

Ngaba umntwana wam uza kuzalwa enecystic fibrosis?

Ukuba wena neqabane lakho nobabini nizithwala, uya kufuna ukuqonda ukuba kungenzeka kangakanani ukuba umntwana wakho azalwe ene-cystic fibrosis. Xa abathwali be-CF benomntwana, kukho iipesenti ezingama-25 zokuba umntwana wabo azalwe enesi sifo kunye neepesenti ezingama-50 zokuba umntwana wabo abe ngumntu ophethe utshintsho lweCF, kodwa angabinaso isifo ngokwabo. Umntwana omnye kwabane akasayi kuba sisifo okanye abe nesifo, ngenxa yoko uqhekeza ulwalamano.

Uninzi lwezibini ezithweleyo zigqiba kwelokuba ziye kuvavanyo lokuhlolwa kwemfuza kwiimbumba zazo, ezibizwa ngokuba yi-preimplantation genetic diagnostic (PGD). Olu vavanyo lwenziwa ngaphambi kokukhulelwa kwiimbumba ezifunyenwe nge-vitro fertilization (IVF). Kwi-PGD, kususwa iseli enye okanye ezimbini kwisibeleko ngasinye kwaye sihlalutywe ukufumanisa ukuba ngaba umntwana uya:

• bane-cystic fibrosis
• ube ngumntu ophethe esi sifo
• ayinalo uhlobo lwesiphene konke konke

Ukususwa kweeseli akuchaphazeli kakubi iimbumba. Nje ukuba wazi olu lwazi malunga nemibungu yakho, unokuthatha isigqibo sokuba uza kufakelwa phi kwisibeleko sakho ngethemba lokuba kuya kwenzeka ukukhulelwa.

Ngaba i-cystic fibrosis ibangela ukungachumi?

Abasetyhini abaphethe i-CF abanamava ngenxa yokungachumi ngenxa yoko. Amanye amadoda aphetheyo aneentlobo ezithile zokungachumi. Oku kuchuma kubangelwa kukungabikho kwendlela, ebizwa ngokuba yi-vas deferens, ehambisa amadlozi ukusuka kumasende ukuya kwilungu lobudoda. Amadoda anolu xilongo anokukhetha ukuba amadlozi abo achache ngokuhlinzwa. Isidoda sinokusetyenziselwa ukufakela amaqabane abo ngonyango olubizwa ngokuba yi-intracytoplasmic sperm injection (ICSI).

Kwi-ICSI, isidoda esinye sitofelwe kwiqanda. Ukuba ukuchumisa kwenzeka, umbungu ufakwa kwisibeleko sowasetyhini, ngokusebenzisa in vitro fertilization. Kuba ayingawo onke amadoda aphethe i-CF anemicimbi yokungachumi, kubalulekile ukuba omabini amaqabane avavanyelwe uhlobo lwesiphene.

Nokuba nobabini nizithwala, ninokuba nabantwana abasempilweni.

Ngaba ndiza kuba naziphi na iimpawu ukuba ndingumphathi?

Uninzi lwee-car car zithwele, oko kuthetha ukuba azinazimpawu. Phantse umntu omnye kuma-31 aseMelika ngumntu ongenampawu yokuphatha uhlobo lweCF olungalunganga. Abanye abathwali bafumana iimpawu, ezihlala ziphakathi. Iimpawu zibandakanya:

• iingxaki zokuphefumla, ezinjenge-bronchitis kunye ne-sinusitis
• ukudumba komzimba

Ziqheleke kangakanani izithwali zecystic fibrosis?

Abathwali beCystic fibrosis bafumaneka kwiqela ngalinye. Okulandelayo luqikelelo lwabathwali bezinto eziguqukayo kwi-CF eUnited States ngokobuhlanga:

• Abantu abamhlophe: nye kwi-29
• I-Hispanics: enye kwi-46
• Abantu abaNtsundu: omnye kuma-65
• Abantu baseAsia baseMelika: nye kwi-90

Nokuba ungoluphi na uhlanga okanye ukuba unembali yosapho yecystic fibrosis, kuya kufuneka uvavanywe.

Ngaba lukhona unyango lwecystic fibrosis?

Akukho lunyango lwe-cystic fibrosis, kodwa ukhetho lwendlela yokuphila, unyango, kunye namayeza anokunceda abantu abane-CF baphile ubomi obupheleleyo, ngaphandle kwemiceli mngeni abajongene nayo.

ICystic fibrosis ichaphazela ikakhulu inkqubo yokuphefumla kunye nokugaya ukutya. Iimpawu zinokuhluka kubukhali kwaye zitshintshe ngokuhamba kwexesha. Oku kwenza isidingo sonyango olusebenzayo kunye nokubeka iliso kwiingcali zonyango kubaluleke kakhulu. Kubalulekile ukugcina ugonyo lusesikhathini kunye nokugcina indawo engenamsi.

Unyango lujolise ikakhulu:

• ukugcina ukutya okwaneleyo
• ukuthintela okanye ukunyanga ukubhloka kwamathumbu
• ukuphelisa i-mucus kwimiphunga
• ukuthintela usulelo

Oogqirha bahlala bemisela amayeza ukufezekisa ezi njongo zonyango, kubandakanya:

• Iintsholongwane zokuthintela nokunyanga usulelo, ikakhulu kwimiphunga
• ii-enzyme zomlomo zepancreatic ukunceda ekwetyisweni
• iziyobisi ezinciphisa umchamo ukuxhasa ukukhululwa kunye nokususwa kwencindi emiphungeni ngokukhohlela

Olunye unyango oluqhelekileyo lubandakanya i-bronchodilators, enceda ukugcina umoya uvulekile, kunye nonyango lomzimba esifubeni. Ngamanye amaxesha iityhubhu zokondla zisetyenziswa ubusuku bonke ukunceda ukuqinisekisa ukusetyenziswa kwekhalori ngokwaneleyo.

Abantu abaneempawu ezibi badla ngokuxhamla kwiinkqubo zotyando, ezinje ngokususa iipolyp ngeempumlo, ukuhlinzwa kwamathumbu, okanye ukufakelwa kwemiphunga.

Unyango lweCF luyaqhubeka ukuphucula kwaye kunye nawo kunjalo nomgangatho kunye nobude bobomi kwabo banazo.

Imbonakalo

Ukuba unethemba lokuba ngumzali kwaye ufumanise ukuba ungumthwali, kubalulekile ukuba ukhumbule ukuba unokhetho kunye nolawulo kule meko.

Ndingavavanywa njani i-CF?

I-American Congress ye-Obstetricians kunye ne-Gynecologists (i-ACOG) icebisa ukubonelela ngokuvavanywa kwenethiwekhi kubo bonke abantu basetyhini kunye namadoda anqwenela ukuba ngabazali. Ukuvavanywa kwabathwali yinkqubo elula. Uya kudinga ukubonelela ngesampulu yegazi okanye yamathe, efunyanwa nge-swab yomlomo. Isampulu iya kuthunyelwa kwilebhu yohlalutyo kwaye inike ulwazi malunga nezinto zemvelo (i-DNA) kwaye iya kugqiba ukuba ngaba uphethe utshintsho kuhlobo lweCF.