Yala nin taamasiɲɛ ninnu bɛ aw den na wa? An ka kunnafoni sɔrɔ Stickler Syndrome kan

Yala a ka teli ka ɲɛ gɛlɛya, mɛnni gɛlɛya walima kolotugudaw dimi bɛ i denmisɛnnin na wa? Laala o ko ninnu bɛ taa ni ɲɛda caman yeli ye, a bɛ se ka kɛ ko a nafa ka bon kosɛbɛ ka kɛ nin bana in dɔnni na, an bɛ kuma min kan bi. Hali n’a y’a sɔrɔ nin ye tɔgɔ ye min tɛ i dɔn dɔɔni, a nafa ka bon kosɛbɛ i ma i n’a fɔ ba walima fa ka kɛ nin bana in dɔn. Sabula ni i y’a dɔn joona, cogo caman bɛ sɔrɔ i bolo ka i den dɛmɛ.

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

Okey, an ka nin faamuya cogo nɔgɔman na. Miiri k’a filɛ an farikolo ye boon ye min jɔra ka ɲɛ. Nin boon in kɔnɔ, fɛn o fɛn bɛ i n’a fɔ birikiw, kogow, ani so sanfɛ, siman bɔgɔdaga dɔ bɛ yen min bɛ fɛn bɛɛ minɛ ɲɔgɔn na, ka fanga ni cogoya di u ma, ɔnhɔn? O cogo kelen na, an farikolo yɔrɔ bɛɛ i n’a fɔ kolo, fari, ɲɛ ani tulo, farikolo yɔrɔ kɛrɛnkɛrɛnnen dɔ bɛ yen min bɛ fɛn bɛɛ minɛ ɲɔgɔn na, ka fanga ni fɛn caman di u ma. an b' o wele ko ɲɔgɔndan yɔrɔw .

Stickler syndrome ye bana ye min bɛ sɔrɔ farikolojidɛsɛ dɔ fɛ min bɛ jɛɲɔgɔnya siraw dilanni ɲɛminɛ. I n’a fɔ min bɛ kɛ boon na ni simanmugu jogo dɔgɔyara cogo min na, ni o fɛnɲɛnamafagalan in barika dɔgɔyara, a bɛ se ka nɔ bila an farikolo yɔrɔ suguya caman na, kɛrɛnkɛrɛnnenya la ɲɛw, tulow, kolotugudaw ani ɲɛda yiriwali Nin ye bana ye min bɛ sɔrɔ cɛya la.

Nin bana in ka ca cogo di?

Tiɲɛ na, nin tɛ bana ye min ka ca kosɛbɛ. Jateminɛw y’a jira ko nin bana in bɛ sɔrɔ den kura 7500 fo 10000 o 7500 fo 10000 la, kelen fo saba ɲɔgɔn na. Nka, tuma dɔw la, o taamasiɲɛw tɛ ye kosɛbɛ. O la, ko dɔw bɛ yen denmisɛn dɔw ka bana taamasiɲɛw tɛ sɔrɔ a la. O la, banabagatɔw bɛ se ka caya sigida la ka tɛmɛ minnu fɔra tiɲɛ na.

Nin bana in taamasiɲɛ kunbabaw ye jumɛnw ye?

O de ye yɔrɔ ye min nafa ka bon kosɛbɛ. Stickler syndrome taamasiɲɛw bɛ se ka ɲɔgɔn ta kosɛbɛ mɔgɔ ni mɔgɔ cɛ. Nin taamasiɲɛ damadɔw bɛ se ka kɛ mɔgɔ dɔw la, ka sɔrɔ dɔw bɛ se ka caman sɔrɔ. A taamasiɲɛw juguya fana tɛ kelen ye. Walasa a faamuyali ka nɔgɔya, an ka nin taamasiɲɛ ninnu tila tila-tila kuluw ye.

Yala Stickler ka bana suguya wɛrɛw bɛ yen wa?

Ɔwɔ, nin bana in tilalen don suguya kunbaba caman na ka kɛɲɛ ni jamu jiginni ye min bɛ a lase mɔgɔ ma ani a taamasiɲɛw cogoya. Sisan, suguya 6 de Sɔrɔla. Nka, a suguya saba fɔlɔw de ka ca.

• Sugu fɔlɔ: Nin ye suguya ye min ka teli ka kɛ. A bɛ sɔrɔ ni ɲɛnayeli ye ani mɛnni dɔgɔyali dɔɔni.
• Sugu filanan : O bɛ taa ni mɛnni gɛlɛya jugumanba ye ka fara yelibaliya kan.
• Sugu sabanan : Mɛnbaliya ni kolotugudaw gɛlɛyaw ka ca nin suguya in na. Kɛrɛnkɛrɛnnenya la, o ye ko ɲɛw tɛ nɔ bila nin suguya in na.
• A suguya IV, V ani VI : Nin suguya ninnu man ca kosɛbɛ, wa u bɛ se ka nɔ juguba bila ɲɛ, tulo ani kolotugudaw la.

Mun na o bɛ ka kɛ? O kun ye mun ye?

I n’a fɔ n y’a fɔ cogo min na ka tɛmɛ, o kunba ye jamu nafama ye. Kolajeni ye farikolojɔlifɛnba ye min bɛ an farikolo jɛɲɔgɔnya yɔrɔw la. O kolajɛ in bɛ i n'a fɔ farikolo "gum". Jɛnkulu suguya damadɔ bɛ yen minnu bɛ nin kolajɛ in dilanni ɲɛminɛ. Misali la, `(KƆL2A1, KƆL11A1, KƆL11A2)`.

Stickler syndrome bɛ mɔgɔ min na, fɛn dɔ b’a la ka fɛn dɔ Changer walima ka fiɲɛ dɔ sɔrɔ o jamu ninnu dɔ la kelen na. O de kosɔn, farikolo tɛ se ka kolajɛ ɲuman wajibiyalen dilan. O de bɛ gɛlɛya minnu kofɔ ka tɛmɛ, olu bɛɛ lase mɔgɔ ma.

Den bɛ nin sɔrɔ cogo di?

Nin ye mɔgɔw ka bɔnsɔnko ye kosɛbɛ.

• A ka ca a la: Ni bangebaga kelen-kelen bɛɛ ye jeninida caman cili sɔrɔ, den bɛ se ka o ciyɛn sɔrɔ 50% . An b'o Weele ko ``autosomal dominant'' cogoya.
• A man teli : Hali ni bangebaga fila bɛɛ kɛnɛyara, a bɛ se ka kɛ u fila bɛɛ ka jamu caman ta ka sɔrɔ u ma taamasiɲɛw jira, wa den bɛ se ka u fila bɛɛ ciyɛn ta ka nin bana in sɔrɔ (autosomal recessive).
• A man teli kosɛbɛ: Tuma dɔw la, nin bana in bɛ se ka kɛ i n’a fɔ fɛn dɔ jiginni min kɛra ni jamu ye, k’a sɔrɔ a ma kɛ denbaya kɔnɔ mɔgɔ si fɛ.

Bana in bɛ se ka sɛgɛsɛgɛ cogo di?

Ni aw bɛ sigasiga ko nin taamasiɲɛ ninnu bɛ aw den na, ni aw taara dɔgɔtɔrɔso la, a bɛ sɛgɛsɛgɛli caman kɛ walasa ka a ɲini ka bana in dɔn.

• Farikololajɛ dafalen: Dɔgɔtɔrɔ bɛ den ɲɛda cogoya, a dawolo sanfɛla, a ɲɛw, a tulo ani a kolotugudaw sɛgɛsɛgɛ ka ɲɛ.
• Denbaya ka furakɛli tariku : Ka ɲininkali kɛ ni denbaya kɔnɔ mɔgɔ dɔ ye nin taamasiɲɛ ninnu sɔrɔ, o nafa ka bon kosɛbɛ bana sɛgɛsɛgɛli la.
• Yeli ni mɛnni sɛgɛsɛgɛli : Sɛgɛsɛgɛli kɛrɛnkɛrɛnnenw bɛ kɛ ɲɛdɔgɔtɔrɔ dɔ fɛ ani tulo, nugu ni galakala kɛrɛnkɛrɛnnen dɔ fɛ.
• Jaa sɛgɛsɛgɛliw:Sɛgɛsɛgɛliw i n’a fɔ X-rays bɛ kɛ ka kɔkolo sɔgɔsɔgɔninjɛ walima fɛn dɔw lajɛ minnu tɛ kolotugudaw la.
• Jɛnkulu sɛgɛsɛgɛli : O de ye fɛɛrɛ kelenpe ye min bɛ se ka bana in sɛgɛsɛgɛ pewu. Joli bɛ se ka ta walasa ka fɛn kɛrɛnkɛrɛnnen dɔ dɔn min bɛ kɛ sababu ye ka jamu caman sɛgɛsɛgɛ.

A bɛ furakɛ cogo di?

A fɔlɔ, Stickler syndrome tɛ bana ye min bɛ se ka furakɛ pewu. Sabula o ye bana ye min bɛ sɔrɔ jamu fɛ. Nka, i kana i hakili ɲagami. Furakɛli nafamaba bɛ yen walasa ka bana in taamasiɲɛw ni gɛlɛyaw kunbɛn. Furakɛli bɛ boloda ka kɛɲɛ ni banabagatɔ kelen-kelen bɛɛ ka bana taamasiɲɛw ye.

• Opereli: Opereli bɛ se ka kɛ walasa ka dawolo faralen dilan, ka ɲɛda ɲɛkisɛ min bɔra ɲɔgɔn na, o siri kokura (o ka kan ka kɛ joona kosɛbɛ), ka dɛmɛ don ninakili gɛlɛyaw la, ani ka joli tiɲɛnenw dilan walima ka u falen.
• Lunɛti ni ɲɛkisɛw: Yelikɛbaliya bɛ mɔgɔ minnu na, olu mago bɛ lunɛti walima ɲɛkisɛw la.
• Lamɛnnikɛlanw : Ninnu bɛ dɛmɛba don mɛnnikɛbaliya bɛ mɔgɔ minnu na.
• Farikoloɲɛnajɛ : A ka ɲi farikoloɲɛnajɛw ka kɛ walasa ka kolotugudaw lamini farikolo yɔrɔw barika bonya, ka kolotugudaw lamagacogo ɲɛ, ani ka dimi dɔgɔya.
• Dimimadafura : Dɔgɔtɔrɔ bɛna fura bɛnnenw di a ma walasa ka kolotugudaw dimi kunbɛn.
• Denw ni ɲinw labɛnni furakɛli : Ni gɛlɛya dɔw bɛ ɲinw jɔyɔrɔ la, furakɛli bɛ se ka kɛ wajibi ye.

Yala a bɛ se ka kɛ ka ɲɛnamaya kɛ cogo bɛnnen na ni nin bana in ye wa?

Ɔwɔ, tiɲɛ yɛrɛ la. Hali ni fura tɛ o la, nin bana in tɛ nɔ bila mɔgɔ si la. Min nafa ka bon kosɛbɛ, o ye ka bana taamasiɲɛw dɔn joona, ka u furakɛ ka ɲɛ, ani ka to ka taa dɔgɔtɔrɔso la tuma bɛɛ. N’o kɛra, mɔgɔ fanba bɛ se ka ɲɛnamaya kɛ cogo bɛnnen na, ka ɲɛnamaya kɛ cogo la min bɛ mɔgɔ wasa.

Aw ka kan ka taa dɔgɔtɔrɔso la cogo jumɛnw na?

Ni nin bana in bɛ aw walima aw den na, aw bɛ aw ɲɛ jɔ nin taamasiɲɛ ninnu na. Ni ninnu dɔ bɔra, aw bɛ taa dɔgɔtɔrɔso la joona.

• Ni aw ye kolotugudaw dimi jugumanba sɔrɔ .
• Ni aw ye yeli kɛ yɔrɔnin kelen, ni yeelen bɛ ye, ka panpan, walima ni biɲɛ bɛ aw yeli la, o bɛ se ka kɛ ɲɛda ɲɛkisɛ bɔli taamasiɲɛw ye. Nin ye bana ye min ka kan ka taa dɔgɔtɔrɔso la joona.
• Ni dumuni walima minni ka gɛlɛn den ma.
• Ni joli bɛ yen, ji min bɛ i n’a fɔ kurukuru, o bɛ bɔ opereli yɔrɔ la, funu, walima bilenni (o ye banakisɛ taamasiɲɛw ye).
• Ni ninakili gɛlɛya dɔ bɛ aw la , aw bɛ taa dɔgɔtɔrɔso la min ka surun aw la kɔrɔtɔko ɲɛmɔgɔso (ETU) la joona, aw ma mɛn.

Ni nin bana in bɛ aw ka denbaya kɔnɔ mɔgɔ dɔ la, ani ni aw b’a fɛ ka den sɔrɔ, a nafa ka bon kosɛbɛ aw ka kuma aw ka dɔgɔtɔrɔ fɛ jamu ladilikan sɔrɔli kan.