Yala aw fana bɛ ka mɛnni tiɲɛ ani ka ɲɛnamini sɔrɔ wa? An ka kunnafoni sɔrɔ Neurofibromatose Type 2 (NF2) kan!

Yala i barika banna i ka mɛnni na ani i ɲɛnamini dɔrɔn wa? Yala i bɛ mankan dɔ mɛn i tulo la dɔrɔn wa? Hali n’aw b’a miiri ko ninnu ye fɛn gansanw ye, tuma dɔw la, bana dɔ bɛ se ka kɛ nin ko ninnu kɔfɛ, an ma caman mɛn min ko la, nka an ka kan ka an janto o la. Bi an bɛ kuma o bana sugu kan. Nin bana in ye Neurofibromatose Type 2 ye, walima NF2 ni a surunyalen don.

N’an y’a fɔ cogo nɔgɔman na, Neurofibromatose Type 2 (NF2) ye mun ye?

NF2 ye bana ye min bɛ sɔrɔ jamu fɛ , min bɛ nɔ bila an ka farikoloɲɛnajɛw la. A bɛ sɔrɔ jɛnɛya dɔ yeli fɛ min bɛ farikolokisɛw falenni kɔlɔsi. O jamu caman yeli bɛ kɛ sababu ye farikolo ka farikolokisɛ caman bɔ. O farikolokisɛ tɛmɛnenw bɛ se ka dalajɛ ka kɛ kuruw ye.

Nka aw kana aw hakili ɲagami, nin kurukuru ninnu fanba tɛ bana jugu ye , o kɔrɔ ye ko kansɛri tɛ u la. O kurukuru ninnu bɛ Kɛ kɛrɛnkɛrɛnnenya la ninnu na:

• Nɛrɛ minnu bɛ lamini na, olu ye nɛrɛw ye minnu bɛ taa an farikolo yɔrɔ dɔw la, i n’a fɔ farikolo yɔrɔw.
• An kunkolo ni an kunkolo cɛ (meninges).
• Kɔkolo kɔkolo.
• Nɛrɛ minnu bɛ kunsɛmɛ ni tulo kɔnɔna siri ɲɔgɔn na, olu bɛ dɛmɛ don mɛnni ni farikolo balansi la.

NF2 ye bana ye min bɛ bana kulu dɔ la min bɛ wele ko Neurofibromatose. Nin bana kulu in bɛ an fari ni an fasaw degun kosɛbɛ.

Nin NF2 bana in ka ca cogo di jamana kɔnɔ?

Nin ye bana ye min man teli ka kɛ. Jateminɛw y’a jira ko NF2 bɛ den kelen ɲɔgɔn minɛ den 33 000 o 33 000 la minnu bɛ bange diɲɛ kɔnɔ. Banabagatɔ minnu bɛɛ sɔrɔla ni neurofibromatose ye, olu 3% ɲɔgɔn ye NF2 banabagatɔw ye.

NF2 taamasiɲɛw ye jumɛnw ye?

NF2 taamasiɲɛw bɛ se ka ɲɔgɔn ta mɔgɔ ni mɔgɔ cɛ. U bɛ bɔ tumuw bɛ yɔrɔ min na aw fari la ani u bonya hakɛ la. Mɔgɔ fanba bɛ fɔlɔ ka taamasiɲɛw sɔrɔ minnu bɛ sɔrɔ kurukuruw fɛ farikolo yɔrɔw la minnu bɛ tulo ni kunsɛmɛ cɛ.

An ka nin taamasiɲɛ ninnu lajɛ walasa k’u faamu ka ɲɛ:

A ka ca a la, a taamasiɲɛw bɛ daminɛ ka bɔ denmisɛnya laban ni san 30 cɛ.Nka o bana bɛ se ka mɔgɔ bɛɛ minɛ a si hakɛ o san. Mɔgɔkɔrɔbaw la, a ka ca a la, farikolojidɛsɛ minnu bɛ tulo ni kunsɛmɛ siri ɲɔgɔn na, olu de bɛ degun fɔlɔ. O de kama mɛnni gɛlɛyaw de bɛ fɔlɔ ka bɔ kɛnɛ kan. Nka denmisɛnw na, kurukuruw ka teli ka kɛ kunsɛmɛ na walima kɔkolo la. Ni bana taamasiɲɛw bɔra denmisɛnya walima funankɛya la, o bɛ se ka a jira ko bana in ka jugu kosɛbɛ.

Tumu suguya jumɛnw bɛ sɔrɔ NF2 la?

Tumu suguya caman bɛ yen minnu bɛ se ka sɔrɔ NF2 la. An ka u lajɛ joona.

Mun na NF2 bɛ sɔrɔ? O sababu ye mun ye?

O sababuba ye fɛn dɔ yeli ye an farikolo la min bɛ wele ko Neurofibromin 2 (NF2) . O jɛnɛya in bɛ dɛmɛ ka farikolojɔlifɛn dɔ dilan min bɛ wele ko ‘merlin’. Nin farikolojɔli dumuni in baara kunba ye ka kurukuruw falenni dabila. O kɔrɔ ye ko a ye tumuw balilan ye .

O la, ni fiɲɛ dɔ bɛ nin NF2 jamu in na, ‘Merlin’ furakisɛ tɛ dilan ka ɲɛ. O kɔfɛ, an farikolo yɔrɔ dɔw bɛ tila k’a sɔrɔ u tɛ se ka u yɛrɛ minɛ, ka caya, ka fara ɲɔgɔn kan ka kɛ kuruw ye.

Gɛlɛya jumɛnw bɛ se ka sɔrɔ nin bana in fɛ?

Ni NF2 ma kunbɛn, gɛlɛya dɔw bɛ se ka sɔrɔ. Olu dɔw ye:

• Lamɛnni bɔnɛ pewu
• Yeli bɔnɛni
• Nɛrɛmugu tiɲɛni banbali
• Ji caman bɛ sɔrɔ kunsɛmɛ na (hydrocephalus) .

Hali ni nin kuru ninnu tɛ kansɛri ye, a ka ca a la NF2 kuru dɔw bɛ se ka kɛ kansɛri ye, a man teli kosɛbɛ. O la, dɔgɔtɔrɔso lajɛw kɛli tuma bɛɛ, o nafa ka bon kosɛbɛ.

NF2 bɛ sɔrɔ cogo di?

Ni aw taara dɔgɔtɔrɔso la, a bɛ fɔlɔ ka aw sɛgɛsɛgɛ ka ɲɛ, ka aw ɲininka aw ka bana taamasiɲɛw la ani ni nin bana in kɛra aw ka denbaya kɔnɔ mɔgɔ dɔ la. O kɔ, a bɛ se ka sɛgɛsɛgɛli caman kɛ walasa ka bana in sɛgɛsɛgɛ:

• MRI (Magnetic Resonance Imaging) scan : O bɛ se ka kuruw dɔn ka jɛya farikolo ni fari la.
• Lamɛnni sɛgɛsɛgɛli: Aw bɛ aw ka mɛnni hakɛ lajɛ.
• Ɲɛ sɛgɛsɛgɛli : Aw bɛ a lajɛ ni ɲɛnamini walima ɲɛ gɛlɛya wɛrɛw tɛ a la.
• Jɛnkulu sɛgɛsɛgɛli : Walasa ka a dɔn ni fiɲɛ bɛ NF2 jamu la.

NF2 furakɛcogo jumɛnw ye?

O fura ma sɔrɔ fɔlɔ. Nka aw kana aw hakili ɲagami, sisan fɛɛrɛ kɔrɔ caman bɛ yen minnu bɛ se ka nin kuru ninnu sɛgɛsɛgɛ, k’u furakɛ ani k’u furakɛ. Aw ka dɔgɔtɔrɔ bɛna fura sugandi min ka fisa aw ma. Furakɛli kɛcogo bɛ se ka ɲɔgɔn ta mɔgɔ kelen-kelen bɛɛ la.

Furakɛli fɛɛrɛ kunbaba dɔw filɛ nin ye:

• Opereli: Tumu minnu bɛ ka taamasiɲɛw bila mɔgɔ la, olu bɔli opereli fɛ. Opereli fana bɛ kɛ ka ɲɛnamini bɔ.
• Chimiothérapie walima Radiation Therapy : Nin furakɛli ninnu bɛ kɛ ka kuru dɔw bonya dɔgɔya. Stereotactic radiothérapie ye o fɛɛrɛ kɔrɔlen dɔ ye min bɛ kɛ ni radiyodisiyɔn ye.
• Lamɛnni ni yelikɛminɛnw : Lamɛnni dɛsɛ bɛ mɔgɔ minnu na, olu bɛ se ka baara kɛ ni minɛnw ye i n’a fɔ `Lamɛnnikɛlanw`, `tulonkɛminɛnw` walima `tulonkɛminɛn minnu bɛ kɛ ni hakili ye`. Fɛn minnu bɛ i n’a fɔ ɲɛkisɛw, olu bɛ se ka dɛmɛ don yeli gɛlɛyaw la.
• Dɛmɛ wɛrɛw: Ni balansi ni taama ka gɛlɛn aw ma, aw bɛ se ka baara kɛ ni fɛnw ye minnu bɛ se ka lamaga.
• Fura : Dɔgɔtɔrɔ bɛ fura di a ma walasa ka bana taamasiɲɛw kunbɛn i n’a fɔ dimi.

Ne ka kan ka taa dɔgɔtɔrɔso la waati jumɛn?

Ni nin taamasiɲɛ ninnu kelen walima caman bɛ aw la, aw ye aw jija ka taa dɔgɔtɔrɔso la.

• Yɛlɛma donna ɲɛnayeli la.
• Lamɛnni bɛ yɛlɛma walima ka mankan bɔ tulo la.
• Farikolo fanga dɔgɔyali walima ɲɛda jiginni.
• Fari kurukuru walima nɔgɔ kura.
• Kungolodimi min bɛ kɛ tuma bɛɛ.
• Dimi bɛ kɛ farikolo yɔrɔw la kun tɛ.
• Ka kɛ ni fiɲɛ ye (kɛrɛnkɛrɛnnenya la).

A ka ca a la, fɛn minnu bɛ yɛlɛma mɛnni walima yeli la, olu de ye nin bana in taamasiɲɛ fɔlɔw ye. O la, ni nin taamasiɲɛ ninnu dɔ ye aw ye, aw bɛ dɔgɔtɔrɔ ka laadilikan ɲini k’a sɔrɔ aw ma mɛn.