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Fɔlɔ, an k’a lajɛ, mun na joli tɛ jɔ jolidɛsɛ la?
N’an b’a fɔ cogo nɔgɔman na, farikolojɔlifɛn kɛrɛnkɛrɛnnenw bɛ yen minnu bɛ an joli dɛmɛ ka kurukuru. An bɛ ninnu wele ko " joli segin furaw " . I n’a fɔ bɔgɔdaga ka kan ka kɛ cogo min na walasa ka birikiw minɛ ɲɔgɔn na ni kogo jɔli ye, o fɛn minnu bɛ joli kuruli kɛ, olu nafa ka bon walasa ka joli jɔ. Hémophilia bɛ mɔgɔ min na, o tigi dɛsɛ bɛ o joli kurulen ninnu dɔ la kelen na.- Hɛmofili A bɛ mɔgɔ minnu na, fɛn dɔ tɛ olu la min bɛ wele ko Facteur VIII.
- Hɛmofili B bɛ mɔgɔ minnu na, fɛn dɔ tɛ olu la min bɛ wele ko Facteur IX.
O la, fura kura in min bɛ wele ko Qfitlia (fitusiran) o ye mun ye?
Nin ye fura ye min bɛ baara kɛ cogo kabakoma na. An kumana ka tɛmɛ a kan ko joli mago bɛ fɛn dɔ la min bɛ wele ko trombine walasa ka joli kuru. An yɛrɛ farikolo la, farikolojɔlifɛn wɛrɛ bɛ yen min bɛ nin tɔrɔsi in dilanni kɔlɔsi, o kɔrɔ ye ko a bɛ tɔrɔsi caman bɔli dabila. A bɛ fɔ a ma ko antithrombine .Miiri o la nin cogo la. Joli kurulen (trombin) bɛ aw fari la min bɛ aw joli dɛmɛ. Nka fɛn wɛrɛ bɛ yen (antithrombine) min b’a kunbɛn ani k’a bali ka baara kɛ. Hémophilie la, fɛn min bɛ dɛmɛ don (trombine) o bɔli bɛ dɔgɔya a daminɛ na. O la ni fɛn min bɛ a bali (antithrombine) bɛ baara kɛ ka ɲɛ, joli kuruli bɛ dɔgɔya ka tɛmɛ fɔlɔ kan. Qfitlia bɛ min kɛ, o ye ka antithrombine hakɛ dɔgɔya min bɛ a bali. O kɔ, i farikolo bɛ trombine hakɛ min dilan a yɛrɛ la, o bɛ to ka baara kɛ ka ɲɛ k’a sɔrɔ a ma bali. O kɔrɔ ye ko a bɛ baara kɛ ni farikolo yɛrɛ ka sigida ye walasa ka dusu don joli kuruli la, sanni ka joli kuruw di i ma, i ye min bɔnɛ. Nin ye fura fɔlɔ ye min bɛ kɛ ka jolidɛsɛ furakɛ.An ka danfara min bɛ nin furakɛli fɛɛrɛ fila ni ɲɔgɔn cɛ, an ka o ɲɛfɔ ka taa a fɛ.
Aw bɛ se ka o danfara in faamuya nɔgɔya la ka bɔ ja in na.| Karamɔgɔya | Laadalata furakɛli (Factor Replacement) . | Qfitlia (fitusiran) furakɛli |
|---|---|---|
| Baarakɛcogo | Kurukuru min tɛ farikolo la, o bɛ di kɛnɛma. | A bɛ dɔ bɔ antithrombine la, o min bɛ joli kuruli bali, wa a bɛ a to farikolo ka baara kɛ ni a yɛrɛ ka trombine ye ka caya. |
| Ni an bɛ di cogo min na | Tuma caman na, a bɛ kɛ jolisira fɛ. | Fari jukɔrɔ (farikolo jukɔrɔ). |
| Fiɲɛturukala | A bɛ se ka kɛ a ka kan siɲɛ caman dɔgɔkun kɔnɔ. | Siɲɛ kelen kalo kɔnɔ walima kalo fila o kalo fila (siɲɛ 6-12 san kɔnɔ). |
| Minnu bɛ ni inhibiteurs ye | Factor normal therapy tɛ baara kɛ, wa furakɛli kɛrɛnkɛrɛnnen wɛrɛw (bypassing agents) ka kan ka kɛ. | Nin furakɛli in bɛ se ka kɛ ka ɲɛ fana mɔgɔ minnu bɛ balilanw (banakisɛfagalan minnu bɛ banakisɛw kɛlɛ). |
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Ni jolidɛsɛ A walima B bɛ aw la ani ni aw si tɛmɛna san 12 kan, aw ka dɔgɔtɔrɔ bɛ se k’a lajɛ ni fura in bɛnnen don aw ma. Min nafa ka bon kosɛbɛ, o ye ko a bɛ se ka kɛ fana mɔgɔw la minnu ye farikolojidɛsɛ furaw (resistance) sɔrɔ facteur furakɛli tɛmɛnenw na. Nka, sani aw ka nin furakɛli in daminɛ, aw ka dɔgɔtɔrɔ bɛna joli sɛgɛsɛgɛli caman kɛ . 1. Antithrombine hakɛ : O bɛ antithrombine hakɛ jateminɛ aw joli la. Qfitlia tata hakɛ bɛ dɔn ka da o nafa kan. 2. Sugunɛ baara : Aw bɛ aw ka sugunɛ kɔlɔsi sani furakɛli ka kɛ ani furakɛli kɛtuma na. Nin fura in bɛ kɛ pikiri ye fari kɔrɔ (farikolo jukɔrɔ). O kɔrɔ ye ko a tɛ di jolisira dɔ kɔnɔ. Aw walima ladonbaga dɔ bɛ se k’a di aw ma so kɔnɔ degeliw kɔfɛ. A bɛ di kɔnɔbara, cɛya walima senkɔni kɔfɛla fari la. Aw ka kan ka aw yɛrɛ tanga yɔrɔw ma, kurukuru walima tigɛ bɛ yɔrɔ minnu na. Ni aw bɛ jolidɛsɛ furakɛli wɛrɛw kɛ kaban, aw bɛ se ka o furaw dabila walima ka u Changer Qfitlia daminɛ kɔfɛ. Aw ka dɔgɔtɔrɔ bɛna o ɲɛfɔ aw ye ka jɛya. Aw kana aw ka sisan furaw tali dabila abada walima ka Qfitlia tali dabila ni aw ma dɔgɔtɔrɔ ka laadilikan di. O kɛli bɛ se ka dɔ fara joli bɔli kan.Yala an ka kan fana k’an janto a kɔlɔlɔw la wa? An bɛ se k’u bali cogo di?
I n’a fɔ fura tɔw bɛɛ, Qfitlia bɛ se ka kɔlɔlɔ dɔw lase a ma. A nafa ka bon ka u janto u la ani ka fɛɛrɛw tigɛ walasa ka u bali.- Joli kurukuruw : Ikomi fura in bɛ joli kuruli sabati, a man teli kosɛbɛ joli kurulenw ka kɛ jolisiraw kɔnɔ minnu man ɲi. Aw ka dɔgɔtɔrɔ bɛna a tata hakɛ bɛnnen latigɛ aw ka antithrombine hakɛ la walasa ka dɔ bɔ o farati la.
- Sugunɛbilenni caman : A bɛ se ka kɛ sugunɛbilenni caman bɛ mɔgɔ dɔw la . o de kama dɔgɔtɔrɔw bɛ to ka sugunɛ cogoya kɔlɔsi ni joli sɛgɛsɛgɛli ye .
- Kɔnɔboli ni biɲɛdimi: Ni aw ye bana taamasiɲɛw sɔrɔ yɔrɔnin kelen i n’a fɔ kɔnɔdimi juguman, kɔnɔboli, ani fɔɔnɔ , aw bɛ dɔgɔtɔrɔ ladɔnniya o yɔrɔnin bɛɛ.
- Banakisɛw : Banakisɛ sɔrɔli farati ka dɔgɔn pikiri kɛyɔrɔ la. O la, a nafa ka bon ka pikiri kɛ tuma bɛɛ ka saniya ani ka kɛ i n’a fɔ dɔgɔtɔrɔ y’a fɔ cogo min na. Saniya wale ɲumanw, i n’a fɔ ka to ka bolo ko, olu fana nafa ka bon.
Take-Home cikan
- Qfitlia (fitusiran) ye jolidɛsɛ A ni B furakɛcogo kura ye min bɛ baara kɛ cogo wɛrɛ la.
- O bɛ baara kɛ ni antithrombine hakɛ dɔgɔyali ye, o min bɛ joli kuruli bali, sanni ka farikolo ka joli kuru dɔgɔyalen di kɛnɛma.
- Nin fura in ye pikiri ye fari jukɔrɔ, a tɛ kɛ jolisira la, wa a ka ca a la a man teli ka kɛ, i n’a fɔ siɲɛ kelen kalo kɔnɔ walima kalo fila o kalo fila.
- Aw ka dɔgɔtɔrɔ bɛna a dɔn ni nin furakɛli in bɛnnen don aw ma joli sɛgɛsɛgɛli caman kɔfɛ.
- Walasa ka kɔlɔlɔw bali, a nafa ka bon ka joli sɛgɛsɛgɛli kɛ (kɛrɛnkɛrɛnnenya la antithrombine ni sugunɛbaralabana) waati ni waati i n’a fɔ dɔgɔtɔrɔ y’a fɔ cogo min na.
- Aw bɛ aw yɛrɛ tanga Qfitlia furakɛli dabila ma ni dɔgɔtɔrɔ ma ladilikan di aw ma kun si la.
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