Yala aw bɛ hami kurukuruw walima kurukuruw la aw fari la wa? Olu bɛ se ka kɛ neurofibromes ye. An ka kuma u kan!

Yala aw delila ka kurukuru misɛnniw walima kurukuruw kɔlɔsi aw fari la, fari jukɔrɔ walima fari sanfɛ wa? Walima i delila k’a ye ko i bɛ mɔgɔ dɔ ye min bɛ ni o ye wa? A bɛnnen don ka siran dɔɔni ani ka hami ni aw ye ninnu ye. Nka kuru bɛɛ tɛ farati ye. Bi an bɛna kuma o kuru sugu dɔ kan, o ye bana ye min bɛ wele ko neurofibrome. Aw kana aw hakili ɲagami, an bɛna kuma o kan ka ɲɛ ani cogo nɔgɔman na.

Neurofibrome ye mun ye?

N’an y’a fɔ cogo nɔgɔman na, neurofibrome ye kuru ɲuman ye min bɛ bonya i ka farikolojidɛsɛbanakisɛw kɛrɛfɛ. Tiɲɛ na, a ye jamu banaw kulu dɔ dɔ ye minnu man ca, n’olu bɛ wele ko neurofibromatose. Mɔgɔ dɔw minnu bangera ni neurofibromatose ye, olu bɛ se ka nin kuru ninnu sɔrɔ fari la, fari jukɔrɔ walima farikolo kɔnɔna na.

Nka nin ye ko ye, neurofibromes fanba tɛ kɛnɛya gɛlɛyaba si lase mɔgɔ ma . Nka, tuma dɔw la, ni u bonyalen don dɔɔni, u bɛ se ka nɔ bila farikolo yɔrɔ caman na ani ka kɛnɛya gɛlɛyabaw lase u ma. O cogo la, dɔgɔtɔrɔw bɛna u bɔ ni opereli ye.

O ko in bɛ jɔn de tɔɔrɔ kosɛbɛ?

Tiɲɛ na, mɔgɔw bɛ bange ni o neurofibromes ye. Nka kabako ye ko ni o kurukuruw y’a daminɛ ka bɔ tiɲɛ na, o bɛ se ka san caman ta. Tuma caman na, u bɛ ye ka jɛya funankɛya waati la.

Jateminɛw y’a jira ko denmisɛn 3000 o 3000, kelen ɲɔgɔn bɛ se ka bana dɔ sɔrɔ min bɛ wele ko Neurofibromatose Type 1 (NF1) . A ka ca a la, a bɛ sɔrɔ sani u ka se san 10. Denmisɛn minnu bɛ ni NF1 ye, olu 25% ɲɔgɔn, walima mɔgɔ naani o naani, kelen ɲɔgɔn, olu bɛ se ka kurukuruw sɔrɔ minnu bɛ se ka bonya fo ka se ka kɛnɛyako gɛlɛyabaw lase u ma.

Neurofibroma bɛ nɔ jumɛn bila an farikolo la?

Neurofibromes bɛ mɔgɔ kelen-kelen bɛɛ minɛ cogo min na, o tɛ kelen ye kosɛbɛ. A bɛ bɔ kuru suguya la, a bonya hakɛ, ani a bɛ yɔrɔ min na farikolo kan.

• Mɔgɔ dɔw fɛ, o bɛ ye i n’a fɔ kurukuru misɛnniw walima fari kurulen yɔrɔw.
• Nka, neurofibroma belebele bɛ mɔgɔ dɔw la, u bɛ se ka nɔ bila u kɔnɔna yɔrɔw la ani hali kɔkolo la.

Aw ye miiri o la, tuma dɔw la a bɛ i n’a fɔ bolokuru fitinin dɔ bɛ kɛ farikolo kɔnɔ. A bɛ nɔ min bila a la, o bɛ bɔ a bɛ yɔrɔ min na.

Yala o kurukuru ninnu bɛ se ka kɛ kansɛri ye wa?

O ye gɛlɛya ye min bɛ mɔgɔ caman kan. Neurofibroma fanba tɛ kɛ bana jugu ye. U ye mɔgɔ ɲumanw ye.

Nka,A suguya kɛrɛnkɛrɛnnen dɔ bɛ yen min bɛ wele ko Plexiform neurofibromas. Nin suguya 10% ɲɔgɔn, walima mɔgɔ tan o tan, kelen ɲɔgɔn, o bɛ se ka kɛ kansɛri ye. O la, a nafa ka bon kosɛbɛ dɔgɔtɔrɔ dɔ ka aw sɛgɛsɛgɛ ni nin kuru in ɲɔgɔn bɛ aw la.

Neurofibroma taamasiɲɛw ye jumɛnw ye?

Neurofibroma taamasiɲɛw tɛ kelen ye. I n’a fɔ a fɔra cogo min na ka tɛmɛ, u bɛ bɔ kuru suguya, a bonya ani a sigiyɔrɔ la. Kabako don, farikolojidɛsɛbana bɛ mɔgɔ minnu na, olu dɔw tɛ se ka taamasiɲɛ si jira. Nka, tuma dɔw la, u bɛ se ka bana dɔw lase mɔgɔ ma i n’a fɔ farilajidɛsɛ walima hali fiyentɔya.

An ka nin farikolojidɛsɛ suguya ninnu lajɛ ani u taamasiɲɛ minnu bɛ tali kɛ u la:

Neurofibromes (banakisɛfagalanw) minnu bɛ sigida la

O fana bɛ wele ko farikolojidɛsɛbanakisɛw.

• ninnu bɛ se ka kɛ kurukuru misɛnninw ye farikolo fan bɛɛ la .
• A ka ca a la, olu bɛ sɔrɔ mɔgɔw la minnu si bɛ san 20 ni san 40 cɛ.
• o kurukuru ninnu bɛ se ka nɛ bɔ , wa u bɛ se ka dimi fana ni u digilen don .

Neurofibromes (banakisɛfagalanw) jɛnsɛnnenw

Nin ye dɔ wɛrɛ ye min bɛ farikolojidɛsɛ suguya kelen na.

• ninnu bɛ ye ka caya kunkolo ni kɔ la .
• A bɛ ye i n’a fɔ yɔrɔ min ka bon, a kɔrɔtalen don fari la.
• Aw bɛ se ka kirin walima ka kirin ni aw magara a la.

Neurofibromes (banakisɛfagalanw) minnu bɛ wele ko plexiform (plexiform neurofibromes).

Nin farikolojidɛsɛ suguya in bɛ sɔrɔ farikolojidɛsɛ kuluw kan.

• Ninnu ka teli ka kɛ denmisɛnniw na minnu ka banakisɛfagalanw (Neurofibromatose Type 1) bɛ u la.
• O falenfɛnw bɛ se ka bonya waati tɛmɛnen kɔfɛ , wa tuma dɔw la u bɛ kɛ kuru belebelebaw ye denmisɛnw fari kan walima u fari jukɔrɔ.
• Olu bɛ se ka degun bila kɔkolo walima farikolo yɔrɔw la, ka taamasiɲɛw lase mɔgɔ ma i n’a fɔ farikolojidɛsɛ , barikantanya ani farigan .
• Den dɔw la minnu bɛ ni Plexiform neurofibromes ye, o kuru ninnu degun kɔkolo kan, o bɛ se ka kɛ sababu ye ka bana dɔ lase u ma min bɛ wele ko scoliosis . A nafa ka bon an k’an janto o la, bawo an minnu ye bangebagaw ye, an ka kan ka an hakili to kosɛbɛ ni nin ɲɔgɔnna fɛn dɔ bɛ den dɔ la.

O bugunw bɛ cogo di? (Yecogo)

Neurofibrome kuruw, minnu bɛ kɛ fari kan walima fari jukɔrɔ, olu ni plexiform neurofibromes tɛ kelen ye kosɛbɛ, minnu bɛ sɔrɔ farikolo kɔnɔna na.

• Neurofibromas localisées / Neurofibromes cutanées: Ɲɛgɛnɛsiraw ani mɔgɔ dogoyɔrɔw :Olu ye kurukuruw ye minnu ɲɛ ye fari ye (nodules) . A ka c’a la, u bɛ sɔrɔ jiribolo, kunkolo, kɔ, bolokɔniw ani senw na. U bonya bɛ se pɔmutɛri ma . u ka nɔgɔn ni u magara u la , wa u bɛ kɛ fɛn ye min bɛ kɛ ni mugu ye dɔɔni . Ni aw ye kuru digidigi nin cogo la, a bɛ jigin fari la, ni aw ye aw bolo bɔ, a bɛ segin ka bɔ san fɛ. Dɔgɔtɔrɔw b'o wele ko "buttonhole taamasiyɛn". A bɛ i n’a fɔ dingɛ dɔ bɛ kamisɔn dɔ kɔnɔ, butɔni bɛ bila yɔrɔ min na.
• Neurofibromes diffuses : Olu bɛ se ka ye i n’a fɔ yɔrɔ bilenman, yɔrɔ kɔrɔtalen fari la .
• Plexiform neurofibromes : Olu bɛ se ka kɛ i n’a fɔ sogo kuru belebelebaw minnu gɛrɛla ka bɔ farikolo la. Dɔgɔtɔrɔw b’u ɲɛfɔ ko “i n’a fɔ kɔnɔw bɔrɔ fari jukɔrɔ.” Ni aw ye nin ɲɔgɔn ye, a ka fisa aw ka dɔgɔtɔrɔso laadilikan ɲini joona.

Neurofibromatose suguya fɔlɔ (NF1) ye mun ye?

Neurofibromatose Type 1 (NF1) ye bana ye min bɛ den kura 3300 o 1 ɲɔgɔn sɔrɔ. Neurofibrome ye nin bana in taamasiɲɛ kelen dɔrɔn de ye (NF1). A taamasiɲɛ wɛrɛw bɛ yen:

• Kafe-au-lait yɔrɔw: Olu ye yɔrɔ ye min ɲɛ ye bulama ye, u ɲɛ ye kafe ye, yɔrɔ minnu ka bon. O nɔ ninnu bɛ se ka bonya waati tɛmɛnen kɔfɛ.
• Ɲɛkisɛ yɔrɔ kulɛrilen (iris) falenni minnu tɛ kojugu kɛ: Olu bɛ wele fana ko Lisch nodules.
• Ɲɛkisɛw ka tumuw : Olu bɛ wele ko ɲɛnayeli sira gliomas.

Ni aw bɛ sigasiga ko nin taamasiɲɛ kelen walima caman bɛ aw den na, a nafa ka bon ka taa denmisɛnw ka dɔgɔtɔrɔ dɔ fɛ walasa ka laadilikan sɔrɔ.

Neurofibroma sababu ye mun ye?

Neurofibroma ye bana taamasiɲɛ ye min bɛ wele ko neurofibromatose type 1 (NF1). Nin bana in bɛ sɔrɔ fɛn dɔ jiginni fɛ walima fɛn dɔ caman cili fɛ jamu dɔ la min bɛ wele ko NF1 jamu. NF1 jamu bɛ cikanw ta walasa ka farikolojɔlifɛn dɔ dilan min bɛ wele ko neurofibromine.

Sisan, a filɛ, nin farikolojɔli dumuni min bɛ wele ko Neurofibromin, o nafa ka bon kosɛbɛ. O ye tumuw balilan furakisɛ ye . O kɔrɔ ye ko a ka c’a la, o de bɛ farikolokisɛw bali ka bonya joona kojugu ani ka tila ka tila u yɛrɛ ma. A b’o kɛ cogo di? Protéine wɛrɛ bɛ yen min bɛ wele ko Ras proteine, o bɛ farikolokisɛw dɛmɛ ka bonya ani ka tila. O Ras poroteyini bɛ ɲɛnabɔ Neurofibromin fɛ.

O la, ni o `(NF1)` jamu bεε bε bεn, a bε seliluw falenni dabila. O kɔ, farikolokisɛw bɛ caya k’a sɔrɔ u tɛ se ka u yɛrɛ minɛ, ka kuruw kɛ. Yala i y’a faamu wa?

Nin bana in `(NF1)` bɛ se ka tɛmɛ denmisɛnw kan ni nin jamu jiginni in bɛ bangebaga dɔ la. N’a sɔrɔ o bangebagaw y’a ciyɛn ta u bangebagaw fɛ. Nka, kabako don, `(NF1)` bɛ mɔgɔ minnu na, olu 50%, o kɔrɔ ye ko u tilancɛ ɲɔgɔn, bana in tɛ u ka denbaya kɔnɔ. O kɔrɔ ye ko nin bana in bɛ se ka kɛ hali ni jamu jiginni kura kɛra.

Dɔgɔtɔrɔw bɛ o sɛgɛsɛgɛ cogo di?

A ka ca a la dɔgɔtɔrɔw bɛ fɔlɔ ka farikolo sɛgɛsɛgɛli kɛ walasa ka neurofibroma (banakisɛfagalanw) dɔn. O kɔrɔ ye k’u bɛ aw lajɛ ka kurukuruw lajɛ.

Ka fara o kan, ja sɛgɛsɛgɛliw i n’a fɔ ninnu bɛ se ka kɛ:

• CT scan (Computed Tomography scan) ani MRI scan (MRI - Magnetic Resonance Imaging): Nin sɛgɛsɛgɛli ninnu bɛ kɛ ka kuru misɛnniw sɔrɔ. U bɛ dɛmɛ fana ka a dɔn kuru dɔ bɛ yɔrɔ min na ani ni opereli bɛna nɔ bila a lamini farikolo yɔrɔw walima farikolo yɔrɔw la.
• PET scan (Positron Emission Tomography scan): Nin sɛgɛsɛgɛli in bɛ dɔgɔtɔrɔw dɛmɛ k’a dɔn ni kuru dɔ tɛ bana jugu ye walima ni a ka jugu.

Furakɛli jumɛnw bɛ kɛ ni neurofibroma ye?

Dɔgɔtɔrɔw bɛ fɛɛrɛ caman kɛ ka neurofibroma furakɛ:

• Kɔlɔsili : Ni aw ka neurofibroma tɛ bana jugu ye ani ni a tɛ gɛlɛyaba si lase aw ma, aw ka dɔgɔtɔrɔ bɛna a fɔ aw ye ko aw ka don ka taa a lajɛ tuma bɛɛ walasa ka a dɔn ni fɛn dɔw bɛ a la.
• Plastiki opereli: Aw ka dɔgɔtɔrɔ bɛ se ka plastiki opereli fɔ walasa ka falenfɛnw bɔ fari la walima fari jukɔrɔ minnu tɛ kojugu ye.
• Opereli : Ni farikolojidɛsɛbana dɔ bɛ aw la min bɛ aw kolo walima aw farikolo yɔrɔw digidigi, dɔgɔtɔrɔ bɛ se ka opereli fɔ aw ye walasa ka kuru caman bɔ, walima ka kuru caman bɔ aw la, ka sɔrɔ aw ma aw farikolo yɔrɔw walima aw farikolo yɔrɔw tiɲɛ.

Yala opereli kɔlɔlɔ dɔw bɛ yen wa?

Neurofibrome opereli kɔlɔlɔw tɛ kelen ye opereli ni opereli. Misali la, opereli min bɛ kɛ ka farilaji bɔ, o kɔlɔlɔ ni opereli min bɛ kɛ ka kɔkolo kuruw bɔ, o kɔlɔlɔw tɛ kelen ye. Ni aw b’a fɛ ka neurofibrome opereli kɛ, a nafa ka bon aw ka dɔgɔtɔrɔ ɲininka opereli kɔlɔlɔw la.

Yala fɛɛrɛ bɛ yen min bɛ se ka o kow bali wa?

Neurofibrome ye bana ye min bɛ sɔrɔ jamu fɛ, o la a ka gɛlɛn ka o kuru ninnu falenni bali .

Mun bɛ kɛ ni neurofibrome (banakisɛfagalan) bɛ ne la?

A ka ca a la, farikolojidɛsɛ bɛ mɔgɔ minnu na, olu fanba tɛ o bana in sɔrɔ . Nka, kuru caman walima kurubaw bɛ mɔgɔ minnu na, olu bɛ se ka hami u yecogo la, wa u b’a miiri ko o bɛ nɔ bila u ka ɲɛnamaya kɛcogo la. Ni nin bana in bɛ aw la, aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ opereli ko la walasa ka kuru yelenw bɔ minnu bɛ aw dusu tiɲɛ ani ka aw yɛrɛ dɔn. Neurofibromes man teli kosɛbɛ ka segin opereli kɔfɛ.

Ne bɛ se ka ne yɛrɛ ladon cogo di ni neurofibroma bɛ ne la?

Neurofibromes ye kuru ɲumanw ye, wa u man teli ka kɛnɛya gɛlɛyabaw lase mɔgɔ ma . Nka, farikolojidɛsɛ caman bɛ mɔgɔ minnu na, walima minnu ka kuru ka bon, olu bɛ se ka u yɛrɛ dɔn tuma dɔw la u yecogo la. O cogo la, opereli bɛ se ka kɛ fɛɛrɛ ɲuman ye.

Ni a sɔrɔla ko kuru jugu dɔ bɛ mɔgɔ la, a bɛ se ka kɛ ko o tɛ siran walima ka siran i n’a fɔ ni a sɔrɔla ni kansɛribana ye. Nka, hali kuru jugumanba i n’a fɔ neurofibrome, o bɛ se ka nɔ bila i ka ɲɛnamaya la.

Olu bɛ se ka nɔ bila i yecogo la. Mɔgɔ dɔw bɛ neurofibromes sɔrɔ, o bɛ se ka bonya fo ka se ka farikolo yɔrɔw ni farikolo yɔrɔw minɛ minnu bɛ u kɛrɛfɛ. Ni a sɔrɔla ko farikolojidɛsɛ bɛ aw la, aw bɛ dɔgɔtɔrɔ ɲininka opereli ko la walasa ka aw farikolojidɛsɛ bɔ.

Aw ye aw hakili to a la fana ko farikolojidɛsɛ bɛ se ka kɛ bana dɔ taamasiɲɛ ye min man teli ka sɔrɔ, min bɛ sɔrɔ ciyɛn fɛ, n’o bɛ wele ko neurofibromatose, o bɛ se ka kɛnɛyako gɛlɛyabaw lase mɔgɔ ma. O la, a nafa ka bon kosɛbɛ ka dɔgɔtɔrɔ ɲininka ni aw ka kurukuru ye neurofibromatose taamasiɲɛ ye.

Take-Home cikan

O bɛ ɲɛ, o la, i ka kan ka i hakili to fɛn nafama minnu na, an ye kuma minnu kan, olu dɔw filɛ nin ye:

• neurofibroma ye kuru suguya ye min bɛ bɔ farikolojidɛsɛbanakisɛw la , wa a ka ca a la , kojugu tɛ a la .
• Olu bɛ se ka kɛ jamu bana dɔ taamasiɲɛ ye min bɛ wele ko neurofibromatose.
• Hali ni a ka ca a la ninnu tɛ kɛnɛya gɛlɛyabaw lase mɔgɔ ma, suguya belebelebaw walima suguya dɔw bɛ se ka gɛlɛyaw lase mɔgɔ ma .
• Plexiform suguya kɛmɛsarada la , farati bɛ u la ka kɛ kansɛri ye .
• A taamasiɲɛw tɛ kelen ye, k’a ta fari kurukuruniw na, farigan, dimi, ani tuma dɔw la hali farikolojidɛsɛ jugumanba.
• Sɛgɛsɛgɛli bɛ kɛ dɔgɔtɔrɔso la ani ni a mago bɛ a la, CT, MRI ani PET sɛgɛsɛgɛliw fɛ.
• Furakɛli ye kɔlɔsili ye, walima opereli ni a mago bɛ a la.
• NinnuA tɛ se ka bali barisa a bɛ sɔrɔ jamu fɛ, nka a taamasiɲɛw bɛ se ka kunbɛn.
• Ni siga bɛ aw la nin kuru in ɲɔgɔn na, a ka fisa aw kana siran ani ka dɔgɔtɔrɔ ka ladilikan ɲini .

I hakili to a la ko i kelen tɛ. Ni aw bɛ o bana ninnu dɔn ani ka dɔgɔtɔrɔso dɛmɛ wajibiyalenw sɔrɔ, o bɛ se ka aw dɛmɛ ka to kɛnɛya la.

` neurofibroma, neurofibromatose, NF1, fari kurukuruw, nɛrɛmuguma, café-au-lait nɔw, jamu banaw