Yala aw den ka sugunɛ bɛ bɔ kɛnɛma wa? An ka kuma Bladder Exstrophy kan!

Ni ba walima fa ye den bangenen kura lajɛ, u b’a jira ko u bɛna den kɛnɛman ni dafalen ye. Nka, miiri k’a filɛ, n’i y’a ye ko den sugunɛ bɛ bɔ fari la u kɔnɔbara la do? O ye yeli ye min bɛ mɔgɔ dusu tiɲɛ tiɲɛ na ani min bɛ siran mɔgɔ ɲɛ. An bɛ min wele ko Bladder Exstrophy furakɛli la, o ye nin ye. A bɛnnen don kosɛbɛ ka siran ani ka hami ni i ye nin ye. Nka min nafa ka bon kosɛbɛ, o ye ko furakɛli ɲɛnama dɔ bɛ yen min bɛ se ka kɛ o la. O la sa, an ka kuma fɛn bɛɛ kan cogo jɛlen na ani cogo nɔgɔman na.

N’an y’a fɔ cogo nɔgɔman na, Sugunɛbilenni ye mun ye?

Sugunɛbilenni ye bana ye min man teli ka sɔrɔ bangekɔlɔsi fɛɛrɛw fɛ. A ka ca a la, ni den bɛ ka bonya kɔnɔbara la, kɔnɔnafɛnw, hali sugunɛbara, bɛ yiriwa farikolo kɔnɔ. Nka, o cogo la, den ka sugunɛ bɛ yiriwa farikolo kɔkan, a bɛ kɛ fari la kɔnɔbara dugumayanfan fɛ.

O cogo la, nin bɛ kɛ:

• Fari ni basibɔn kolo minnu bɛ kɔnɔbara duguma, olu tɛ ɲɔgɔn sɔrɔ ka ɲɛ.
• O la, sugunɛ bɛ ye kɔnɔbara fari fɛ.
• Sugunɛ, min ka kan ka kɛ i n’a fɔ balon, o cogo la, a cogoya bɛ kɛ fla ye.
• O de kosɔn, sugunɛ tɛ se ka sugunɛ minɛ walima ka baara kɛ ka ɲɛ. Sugunɛ bɛ to ka bɔ ka bɔ.

Nin bana in bɛ nɔ bila den fari la cogo di?

An ka a lajɛ sugunɛ kɛcogo bɛ baara kɛ cogo min na a ka ca a la. Ni aw ka sugunɛ falen don sugunɛ na, taamasiɲɛ dɔ bɛ ci ka bɔ farikoloɲɛnajɛ la ka taa kunsɛmɛ na min b’a fɔ ko “Sugunɛ falen don sisan.” O kɔ, sugunɛbaralabana fasaw bɛ sɔgɔsɔgɔ (u bɛ sɔgɔsɔgɔ), ani sugunɛ bɛ bɔ sugunɛbara fɛ.

Nka nin wale in tɛ kɛ den na min bɛ ni Sugunɛbilenni ye. Ikomi den ka sugunɛ bɛ kɛnɛma, sugunɛ bɛ se ka lajɛ yɔrɔ min na. O la sugunɛ bɛ sugunɛ min Bɔ, o bɛ Bɔ ka Tɛmɛ o sugunɛ dabɔlen in fɛ kɔnɔbara la.

Yala Sugunɛbilenni suguya wɛrɛw bɛ yen wa?

Ɔwɔ, sugunɛbilenni ye bana ye min bɛ bangekɔlɔsi fɛɛrɛw kulu dɔ la min bɛ wele ko Sugunɛbilenni-Epispadias Complex (BEEC). Nin bana ninnu kelen dɔrɔn bɛ se ka kɛ denmisɛn dɔw la, ka sɔrɔ dɔw fana bɛ se ka nin bana ninnu caman sɔrɔ ɲɔgɔn fɛ.

Yala nin ko in bɛ kɛ tuma caman na wa?

Ayi, Sugunɛbilenni ye bana ye min man teli ka sɔrɔ . Den kura 50 000 o 50 000, a bɛ mɔgɔ kelen dɔrɔn de minɛ.

A taamasiɲɛ kunbabaw ye jumɛnw ye?

A taamasiɲɛ kunba ni a jɛlen don, o ye sugunɛbaralabana ye min bɛ bɔ kɔnɔbara la. Ka fara o kan, taamasiɲɛ damadɔ wɛrɛw bɛ se ka ye.

• Kɔnɔbara basigilen bɛ duguma kosɛbɛ ka tɛmɛ a cogo kɔrɔ kan.
• Kɔnɔbara kolo tɛ ɲɔgɔn na, nka o nɔ na, ​​u bɛ bɔ ɲɔgɔn na.
• Kɔnɔnatumu bɛ se ka kɛ ɲɛfɛ ka tɛmɛ a cogo kɔrɔ kan.
• Cɛdenw na , a bɛ se ka kɛ ko cɛya ma jigin ka don cɛya la (cɛya min ma jigin).
• Den dɔw fana bɛ se ka kirinni sɔrɔ , i n’a fɔ kɔnɔbara basigilen walima kɔnɔbara basigilen.

O sababuw ni a faratiw ye mun ye?

Nin bana in sababu tigitigi ma dɔn fɔlɔ , nka dɔgɔtɔrɔw dalen b’a la ko jamu ni sigida fɛnw faralen ɲɔgɔn kan, o bɛ se ka jɔyɔrɔba ta. A nafa ka bon k’a faamu ko jalaki si tɛ bangebagaw la min bɛ nin bana in lase mɔgɔ ma.

Farati minnu dɔnna, olu dɔw filɛ nin ye:

• Denbaya ka tariku: Ni nin bana in tun bɛ bangebaga dɔ la a denmisɛnman, u den bɛ se ka bana sɔrɔ mɔgɔ 70 o 70 la, 1 ɲɔgɔn.
• Siya: A jirala ko nin bana in ka ca kosɛbɛ mɔgɔ finmanw na.
• Cɛya ni musoya: Cɛdenw ka teli ka nin bana in sɔrɔ siɲɛ saba ɲɔgɔn ka tɛmɛ npogotigininw kan.
• Bange furakɛli : Kalan dɔw y’a jira ko ni aw bɛ fɛɛrɛ dɔw kɛ i n’a fɔ bangekɔlɔsi fɛɛrɛw (IVF) bɛ se ka dɔ fara o farati kan dɔɔni.

Furakɛli ni a ɲɛnabɔcogo bɛ cogo di?

den min bɛ ni sugunɛbilenni ye , siga t' a la , o mago bɛna kɛ opereli la . Nin dɔrɔn de ye furakɛli ye. Ka kɛɲɛ ni den ka bana juguya ye, bana bɛ se ka latilen pewu ni opereli kelen walima opereli caman ye.

A ka ca a la, opereli bɛ kɛ cogo fila la:

1. Opereli kelen : A dɔw la, kɔnɔbara bɛ datugu ani ka sugunɛbara dilan opereli kelen na min bɛ kɛ kalo fɔlɔ kɔnɔ den bangenen kɔfɛ.

2. Opereli kɛcogo saba: Nin ye fɛɛrɛ ye min bɛ kɛ ka caya.

• A daminɛ fɔlɔ (jiginni kɔfɛ): Den bangenen tile damadɔ kɔnɔ, den ka sugunɛ bɛ don fari kɔnɔ ka kɔnɔbara datugu. O waati kelen na, opereli (`osteotomy`) bɛ kɛ walasa ka basi-bɔn kolo, minnu ni ɲɔgɔn cɛ ka jan, olu lase ɲɔgɔn ma.
• Taabolo 2nan (kalo 6 ɲɔgɔn): Nin opereli in (epispadias repair) bɛ bangekɔlɔsi fɛɛrɛw ni sugunɛbaralabana labɛn kokura.
• Taabolo 3nan (san 4-5 ɲɔgɔn): Sisan den bɛ ɲɛgɛn dege san na. Nin opereli in (`augmentation cystoplasty`) bɛ kɛ walasa ka sugunɛ kɛ ka bonya fo ka se ka sugunɛ minɛ.

Gɛlɛya minnu bɛ se ka sɔrɔ kuntaalajan kɔnɔ

Hali furakɛli kɔfɛ, den dɔw bɛ se ka sugunɛ walima sugunɛ gɛlɛyaw sɔrɔ.

• Sugunɛbilenni (pyelonephrite) .
• Sugunɛbilenni
• Sugunɛbilenni farati ka bon dɔɔni kɔfɛ ɲɛnamaya kɔnɔ.
• Gɛlɛya minnu bɛ tali kɛ cɛnimusoya baara la.

Nin bana in bɛ muso minnu na, olu bɛ jate kɔnɔmaya faratiba ye , wa a ka ca a la u ka kan ka sezarɛni (C-section) kɛ walasa ka den bange. Cɛw mako bɛ se ka kɛ bangekɔlɔsi fɛɛrɛ dɛmɛnanw na i n’a fɔ kɔnɔtiɲɛ in vitro (IVF) walasa ka den sɔrɔ.

I bɛ i dusukunnataw kɛ cogo min na i n’a fɔ bangebaga

K’a dɔn ko bana dɔ bɛ i den bangenen na, o ye ko gɛlɛn ye bangebaga bɛɛ bolo ka min ɲɛnabɔ. I bɛ se ka siran, ka jɔrɔ ani ka jalaki. O dusukunnataw bɛɛ ye ko ye min tɛ bɛn kosɛbɛ.

Nka i hakili to a la ko nin tɛ i ka hakɛ ye . Hali dɔgɔtɔrɔw tɛ se k’a fɔ k’a jɛya mun na Sugunɛbilenni bɛ kɛ. Aw bɛ waati dɔ di aw yɛrɛ ma walasa ka o cogoya faamu ani ka aw yɛrɛ dege a la. Furakɛliw bɛ nɔ bɔ kosɛbɛ. Nin bana in tɛna aw den bali ka denmisɛnya kɛcogo ɲuman sɔrɔ. Dɔgɔtɔrɔw b’i dusukunnataw faamu kosɛbɛ. U bɛ yen walasa k’aw dɛmɛ ani k’aw laadi sira bɛɛ senfɛ. O la, aw kana siran ka kuma aw ka dɔgɔtɔrɔ fɛ fɛn bɛɛ kan.