ICystic Fibrosis Carrier: Okudingeka Ukwazi

-Delile

• Ngabe ingane yami izalwe ine-cystic fibrosis?
• Ingabe i-cystic fibrosis ibangela ukungazali?
• Ngizoba nezimpawu ezithile uma ngiphethe?
• Kuvame kangakanani ukuthwala i-cystic fibrosis?
• Ingabe kukhona ukwelashwa kwe-cystic fibrosis?
• Umbono
• Ngingahlolwa kanjani i-CF?

Yini i-cystic fibrosis carrier?

ICystic fibrosis yisifo esizuzwe njengefa esithinta izindlala ezakha amafinyila nezithukuthuku. Izingane zingazalwa zine-cystic fibrosis uma umzali ngamunye ephethe isakhi sofuzo esisodwa esingalungile sesifo. Umuntu one-gene eyodwa ejwayelekile ye-CF nohlobo olulodwa lwe-CF olunamaphutha waziwa njenge-cystic fibrosis carrier. Ungaba nguthwali ungabi naso lesi sifo ngokwakho.

Abesifazane abaningi bathola ukuthi bangabathwali lapho bekhulelwa, noma bezama ukukhulelwa. Uma umlingani wakhe naye ephethe, ingane yabo ingazalwa inesifo.

Ngabe ingane yami izalwe ine-cystic fibrosis?

Uma wena nomlingani wakho nobabili nithwala, cishe nizofuna ukuqonda ukuthi kungenzeka kanjani ukuthi ingane yakho izalwe ine-cystic fibrosis. Lapho abathwali be-CF ababili benengane, kunamathuba angamaphesenti angama-25 okuthi ingane yabo izalwe inalesi sifo kanye namaphesenti angama-50 okuthi ingane yabo izoba ngumthwali wokuguqulwa kwezakhi zofuzo ze-CF, kodwa ingabi naso lesi sifo uqobo. Eyodwa ezinganeni ezine ngeke ibe ngabathwali futhi ayinaso lesi sifo, ngakho-ke iphula uchungechunge lwamafa.

Imibhangqwana eminingi ethwalayo ithatha isinqumo sokuhlolwa ukuhlolwa kofuzo emibungwini yayo, ebizwa nge-preimplantation genetic diagnostic (PGD). Lokhu kuhlolwa kwenziwa ngaphambi kokukhulelwa emibungwini etholwe nge-in vitro fertilization (IVF). Ku-PGD, kukhishwa iseli elilodwa noma amabili embungwini ngamunye bese lihlaziywa ukuthola ukuthi ingane izokwenza lokhu:

• bane-cystic fibrosis
• ube othwala lesi sifo
• anginaso nhlobo isakhi sofuzo esinesici

Ukususwa kwamaseli akuphazamisi imibungu. Lapho usuwazi lolu lwazi ngemibungu yakho, unganquma ukuthi yini okufanele uyitshale esibelethweni sakho ngethemba lokuthi kuzokhulelwa.

Ingabe i-cystic fibrosis ibangela ukungazali?

Abesifazane abaphethe i-CF ababi nezinkinga zokuzala ngenxa yalokho. Amanye amadoda athwala uhlobo oluthile lokuzala. Lokhu kuzala kubangelwa umgudu ongekho, obizwa nge-vas deferens, ohambisa isidoda usuka emasendeni usiyise endondeni. Abesilisa abanalesi sifo banenketho yokuthi isidoda sabo sitholakale ngokuhlinzwa. Isidoda singasetshenziselwa ukufakela umlingani waso ngokwelashwa okubizwa nge-intracytoplasmic sperm injection (ICSI).

Ku-ICSI, kufakwa isidoda esisodwa eqandeni. Uma ukukhulelwa kwenzeka, umbungu ufakwa esibelethweni sowesifazane, nge-in vitro fertilization. Njengoba kungebona bonke abesilisa abaphethe i-CF abanezinkinga zokungazali, kubalulekile ukuthi bobabili abalingani bahlolelwe isakhi sofuzo esingalungile.

Noma ngabe nobabili ningabathwali, ningaba nezingane ezinempilo.

Ngizoba nezimpawu ezithile uma ngiphethe?

Abathwali abaningi be-CF abanangqondo, okusho ukuthi abanazimpawu. Cishe oyedwa kwabangu-31 baseMelika uyisithwali esingenazimpawu sofuzo lweCF olungasebenzi kahle. Abanye abathwali bahlangabezana nezimpawu, ezivame ukuba mnene. Izimpawu zifaka:

• izinkinga zokuphefumula, njenge-bronchitis ne-sinusitis
• isifo sokuqaqamba kwamalunga

Kuvame kangakanani ukuthwala i-cystic fibrosis?

Izithwali zeCystic fibrosis zitholakala kuzo zonke izinhlanga. Okulandelayo yizilinganiso zabathwali bezakhi zofuzo ze-CF e-United States ngokobuhlanga:

• Abantu abamhlophe: oyedwa kwabangu-29
• AmaSpanishi: oyedwa kwabangu-46
• Abantu abamnyama: oyedwa kwabangu-65
• Abantu base-Asia baseMelika: oyedwa kwabangu-90

Kungakhathalekile ukuthi ungowaluphi uhlanga noma uma unomlando womndeni we-cystic fibrosis, kufanele uhlolwe.

Ingabe kukhona ukwelashwa kwe-cystic fibrosis?

Alikho ikhambi le-cystic fibrosis, kepha ukukhetha indlela yokuphila, izindlela zokwelashwa, nemithi kungasiza abantu abane-CF ukuthi baphile izimpilo ezigcwele, yize kunezinselelo ababhekana nazo.

ICystic fibrosis ithinta kakhulu uhlelo lokuphefumula kanye nomgudu wokugaya ukudla. Izimpawu zingaba buhlungu futhi zishintshe ngokuhamba kwesikhathi. Lokhu kwenza isidingo sokwelashwa okusebenzayo nokuqapha kochwepheshe bezokwelapha kubaluleke kakhulu. Kubalulekile ukugcina imigomo isesikhathini futhi igcine indawo engenantuthu.

Ukwelashwa kuvame ukugxila ku:

• ukugcina ukondleka okwanele
• ukuvimbela noma ukwelapha ukuvinjelwa kwamathumbu
• ukuqeda amafinyila emaphashini
• ukuvimbela ukutheleleka

Odokotela bavame ukunikela ngemithi yokufeza lezi zinhloso zokwelashwa, kufaka phakathi:

• ama-antibiotic ukuvimbela nokwelapha ukutheleleka, ikakhulukazi emaphashini
• ama-enzyme omlomo we-pancreatic ukusiza ekugayeni
• imishanguzo yokuncipha amafinyila ukuxhasa ukukhululeka nokususwa kwamafinyila emaphashini ngokukhwehlela

Ezinye izindlela zokwelapha ezijwayelekile zifaka ama-bronchodilators, asiza ukugcina imigwaqo yomoya ivulekile, kanye nokwelashwa kwesifuba ngokomzimba. Amashubhu wokondla kwesinye isikhathi asetshenziswa ubusuku bonke ukusiza ukuqinisekisa ukusetshenziswa okwanele kwekhalori.

Abantu abanezimpawu ezinzima bavame ukuzuza ezinqubweni zokuhlinza, njengokukhishwa kwe-nasal polyp, ukuhlinzwa kwamathumbu, noma ukufakelwa kwamaphaphu.

Ukwelashwa kwe-CF kuyaqhubeka nokuthuthuka futhi kanjalo nekhwalithi nobude bempilo kulabo abanayo.

Umbono

Uma unethemba lokuba umzali futhi uthole ukuthi ungumthwali, kubalulekile ukukhumbula ukuthi unezinketho futhi ulawula isimo.

Ngingahlolwa kanjani i-CF?

I-American Congress of Obstetricians and Gynecologists (ACOG) incoma ukuhlinzeka ngokuhlolwa kwezinkampani zabo bonke abesifazane nabesilisa abafisa ukuba ngabazali. Ukuhlolwa kwesithwali inqubo elula. Uzodinga ukuhlinzeka ngesampula yegazi noma yamathe, etholwa nge-swab yomlomo.Isampuli izothunyelwa ebhodini ukuze ihlolisiswe futhi inikeze ulwazi mayelana nezinto zakho zofuzo (i-DNA) futhi izonquma ukuthi ngabe uguqukile yini kuhlobo lweCF.