Yala nin taamasiɲɛ ninnu bɛ aw den na wa? An ka kuma Fragile X Syndrome (FXS) kan .

N’a sɔrɔ aw y’a kɔlɔsi ko aw denmisɛnnin bɛ ka yiriwali kɔtigɛ walima u ka kɛwale dɔw ye kabako ye dɔɔni. N’a sɔrɔ u bɛ kɔfɛ ka kuma, walima u t’a fɛ ka jɛɲɔgɔnya kɛ ni denmisɛn tɔw ye. Tuma dɔw la, o fɛnw kɔfɛ, bana dɔ bɛ se ka sɔrɔ min bɛ wele ko Fragile X Syndrome (FXS). Aw kana siran ni aw ye nin tɔgɔ in mɛn. An ka kuma a kan dɔɔnin bi, cogo nɔgɔman na kosɛbɛ, o bɛ ɲɛ wa?

Fragile X Syndrome ye mun ye?

N’an y’a fɔ cogo nɔgɔman na, Fragile X Syndrome ye bana ye min bɛ sɔrɔ mɔgɔw fɛ ka bɔ mɔgɔw la ka taa mɔgɔw la . A bɛ se ka kɛ sababu ye ka den farikolo yɛlɛma dɔw sɔrɔ, ka kɛwalew gɛlɛyaw sɔrɔ, ani ka kɛnɛyako gɛlɛya suguya wɛrɛw sɔrɔ. I n'a fo:

• Den ka yiriwali kɔtigɛbaliya.
• Hakilila-dɛsɛw.
• Kalanbaliya minnu bɛ sɔrɔ.
• Jɔrɔnanko min bɛ kɛ tuma caman na.
• Gɛlɛya ka jateminɛ kɛ ani ka farikoloɲɛnajɛ kɛ kojugu, o ye bana ye min bɛ wele ko Attention-deficit/hyperactivity disorder (ADHD).
• A bɛ se ka autizmu bana taamasiɲɛw yɛrɛ jira.

A bɛ fɔ a ma ko "Fragile X" bari ni X chromosome lajɛra ni mikroskɔpu ye, a yɔrɔ kelen bɛ i n'a fɔ "karilen" walima "fragile". A tɔgɔ wɛrɛ ye Martin-Bell syndrome ye. Nin ye hakili ni yiriwali bana ciyɛntalenw dɔ ye (IDD).

Nin bana in ka ca cogo di?

Ɲininikɛlaw dalen t’a la tigitigi diɲɛ kɔnɔ mɔgɔ hakɛ min bɛ ni bana ye min bɛ wele ko Fragile X Syndrome, nka u y’a jateminɛ ko npogotiginin 11000 o 11000, kelen ɲɔgɔn bɛ se ka kɛ o bana ye ani cɛden 7000 o 7000 .

Fragile X Syndrome taamasiɲɛw ye jumɛnw ye?

Fragile X Syndrome bɛ se ka nɔ bila den hakili la, a hakili kɛnɛya la, a farikolo cogoya la ani a kɛcogo la. An ka a lajɛ bana taamasiɲɛ minnu ka teli ka kɛ yɔrɔ kelen-kelen bɛɛ la.

Gɛlɛya minnu bɛ tali kɛ hakilitigiya la

• Kalanbaliya: A bɛ se ka gɛlɛya ka fɛn kuraw kalan ani ka u hakili to a la.
• IQ dɔgɔyali : Ni mɔgɔw bɛ kɔrɔbaya, u ka IQ hakɛ bɛ se ka dɔgɔya dɔɔni.
• Denmisɛnninw ka yiriwali taamasiɲɛ minnu bɛ mɛn sen na: Misali la, u bɛ se ka kɛ kɔfɛ ka tɛmɛ denmisɛn tɔw kan taama, kuma ani dumuni daminɛni na u yɛrɛma.
• Kumaɲɔgɔnya dɛsɛ minnu tɛ kuma ye: O kɔrɔ ye ko a bɛ se ka gɛlɛya ka hakilinaw fɔ ni bolokɔfɛfɛnw ye, ni ɲɛda cogoyaw ye, ani ni taamasiyɛn wɛrɛw ye minnu tɛ kuma ye.
• Gɛlɛya minnu bɛ kan faamuyali ni a fɔli la:Ni aw si bɛ san fila ɲɔgɔn na, aw bɛ se k’a ye ko gɛlɛya dɔw bɛ aw den na daɲɛw fɔli ni u faamuyali la.
• Jate gɛlɛyaw ɲɛnabɔli gɛlɛya.

Aw ye aw jija ka aw den ka yiriwali lajɛ ni nin kɔtigɛlen ninnu dɔ la kelen tɛ. A nafa ka bon ka kuma i ka dɔgɔtɔrɔ fɛ, yiriwali siratigɛ la minnu bɛnnen don si hakɛ kelen-kelen bɛɛ ma ani u jateminɛcogo ɲuman.

Hakilila-kɛnɛya gɛlɛyaw

• Jɔrɔnanko min bɛ kɛ tuma caman na .
• Kow i n' a fɔ degun .
• Mako barikama ka segin fɛn dɔw kan walima ka miiri u la (Obsessive-compulsive behaviors).

Farikolo cogoyaw

Nin taamasiɲɛ ninnu tɛ kɛ mɔgɔ bɛɛ la, nka a taamasiɲɛ minnu ka teli ka ye, olu dɔw ye:

• Ɲɛda janyalen, nɔgɔlen.
• Ɲɛgɛnɛba dɔ.
• Koba dɔ don.
• Tulo belebelebaw.
• Ɲɛw tigɛlen (strabismus).
• Boloci kɛli kojugu, walima "duble-jointed".
• Senw fla.
• Cɛdenw ka cɛya bɛ bonya cɛya ni musoya kɔfɛ.
• Dawolo min ka bon kosɛbɛ.
• Farikolo fanga dɔgɔyali (hypotonia), o kɔrɔ ye ko farikolo bɛ se ka a yɛrɛ sɛgɛn dɔɔni.

Taamacogo gɛlɛyaw ye jumɛnw ye?

Fragile X Syndrome bɛ se ka kɛwale gɛlɛya suguya caman lase den ma. I n'a fo:

• Jateminɛ gɛlɛya ani farikoloɲɛnajɛ kojugu (TDAH).
• Sosiyali jɔrɔnanko ni maloya. Miiri k’a filɛ, n’i taara ɲɛnajɛ dɔ la i somɔgɔ dɔ ka so, i bɛ i yɔrɔ janya mɔgɔ wɛrɛw la, ka i ɲɛw jigin ni mɔgɔ dɔ kumana.
• Taamacogo minnu bɛ segin-ka-bɔ i n’a fɔ bolonɔbila walima bolo kinni.
• K’a sɔrɔ a ma sɔn ka ɲɛda lajɛ.
• Dusukunnataw - O kɔrɔ ye ko i bɛ se ka fɛnw dɔn kojugu i n’a fɔ yɔrɔ minnu falen don mɔgɔw la, mɔgɔ min bɛ maga i fari la, mankan, dumuni dɔw, ani finiw. Tuma dɔw la, hali mankan fitini dɔ bɛ se ka aw kabakoya, walima aw bɛ se k’a fɔ ko aw tɛ se ka dumuni dɔw dun.
• Gɛlɛya ka mɔgɔ wɛrɛw dusukunnataw ni u ka sigida taamasiyɛnw faamu.

Mun de bɛ kɛ sababu ye ka Fragile X Syndrome sɔrɔ?

O bɛ bɔ jamu jiginni na jamu `FMR1` la min bɛ an ka X kolosinsinnan kan. Nin `FMR1` jamu in bɛ ci bila an farikolo ma a ka farikolojɔlifɛn dɔ dilan min bɛ wele ko `FMRP`. Nin `FMRP` furakisɛ in nafa ka bon kosɛbɛ jɛɲɔgɔnya `(synapses)` yiriwali la farikoloɲɛnajɛw ni ɲɔgɔn cɛ. O `synapses` ninnu de sababu fɛ, nɛrɛmuguma `(nerve impulses)` bɛ taa.

K’a sababu kɛ fɛn dɔ jiginni ye FMR1 jamu la, ADN yɔrɔ dɔ min bɛ wele ko CGG triplet repeat, o bɛ janya kosɛbɛ ka tɛmɛ a cogo kɔrɔ kan. A ka ca a la, nin yɔrɔ in bɛ segin siɲɛ 5 fo siɲɛ 40 ɲɔgɔn, nka Fragile X Syndrome bɛ mɔgɔ minnu na, a bɛ segin ka tɛmɛ siɲɛ 200 kan .O bɛ kɛ sababu ye ka `FMR1` jamu "makun", o kɔrɔ ye ko a tɛ se ka `FMRP` furakisɛ dilan ka ɲɛ. O bɛ nɔ bila den ka farisogo la ani ka kɛ sababu ye ka Fragile X Syndrome taamasiɲɛw jira.

O bɛ tɛmɛn cogo di ka bɔ mɔgɔw la ka taa mɔgɔw la? (Cɛsiricogo misali) .

Fragile X Syndrome bɛ ciyɛn ta cogo la min bɛ tali kɛ X ni ɲɔgɔn cɛ fanga la. O kɔrɔ ye ko jɛnɛya min b’a lasegin, o bɛ sɔrɔ X kolosinsinnan kan. A ye "dominant" ye barisa hali ni jamu caman sɛgɛsɛgɛlen in kopi kelen bɛ i bolo, o bɛ se ka bana in bila mɔgɔ la.

Fragile X Syndrome ka teli cɛdenw na wa a taamasiɲɛw ka jugu ka tɛmɛ barisa X kolosinsinnan kelen dɔrɔn de bɛ u la. Npogotigininw bɛ ni X kolosinsinnan fila ye . O la, hali ni fɛn dɔ jiginna X kolosinsinnan kelen na, X kolosinsinnan kɛnɛman tɔ kelen bɛ se ka taamasiɲɛw jira, wa a bɛ se ka kɛ a tabaga dɔrɔn de ye. Nka, cɛden minnu bɛ ni Fragile X ye, olu bɛ bana taamasiɲɛw sɔrɔ tuma bɛɛ.

Yala kɛnɛyako farati wɛrɛw bɛ Fragile X tabaga ma wa?

Ɔwɔ, o nafa ka bon kosɛbɛ. Ni Fragile X Syndrome bɛ den na, aw ka kan ka o fɔ dɔgɔtɔrɔ ye. Ikomi aw bɛ se ka kɛ a tabaga ye, a bɛ se ka kɛ ko faratiw bɛ aw la kɛnɛyako la, i n’a fɔ:

• Musoya dabila bɛ kɛ sani a ka se san 40 ma.
• Bana minnu bɛ sɔrɔ hakilijagabɔ fɛ i n’a fɔ hakiliɲagami.
• Tansiyɔn jiginni.
• Farifaga.
• Jɔrɔ.
• Kunkolodimi (migraines).
• Ɲɛgɛnɛsiraw baara dɔgɔyali (Hypothyroïdie).
• Dimi basigilen.
• Sunɔgɔbaliya.

Gɛlɛya jumɛnw bɛ se ka sɔrɔ Fragile X Syndrome fɛ?

Tuma dɔw la, Fragile X Syndrome bɛ mɔgɔ minnu na, olu bɛ se ka kɛnɛyako wɛrɛw sɔrɔ. Kalan dɔ la, bangebagaw y’a jira ko u denw fana bɛ ni:

• Kɔnɔboli.
• Sunɔgɔ gɛlɛyaw. Sɛgɛsɛgɛli wɛrɛ y’a jira ko denmisɛn 10 o 10 minnu bɛ Fragile X ni autisme spectrum disorder fila bɛɛ la, olu 4 bɛ sunɔgɔ gɛlɛyaw sɔrɔ, ni i ye o suma ni denmisɛn 3 o 10 ye minnu bɛ ni Fragile X dɔrɔn ye.
• Binkanni walima dimi. Fragile X bɛ denmisɛn minnu na, kɛrɛnkɛrɛnnenya la minnu bɛ ni autizmu bana ye, olu ka teli ka kɛ mɔgɔ farimanw ye.
• Yɛrɛjogin kɛcogo.
• Bonyakojugu.

Fragile X Syndrome bɛ sɔrɔ cogo di?

Walasa ka Fragile X Syndrome sɛgɛsɛgɛ, ADN bɛ ta ka bɔ aw den joli la walima farikolo yɔrɔ wɛrɛw la.Dɔgɔtɔrɔ bɛna a ta ka taa a bila laboratuwari dɔ la. O yɔrɔ la, u bɛna a lajɛ ni den in bɛ ni fɛn falen ye min kofɔra ka tɛmɛ `FMR1` jamu kɔnɔ.

Ni aw kɔnɔma don ani ni aw bɛ sigasiga ko Fragile X Syndrome bɛ se ka kɛ aw den na, aw bɛ se ka ɲɔgɔn sɔrɔ ni jamu ladilikɛla dɔ ye ani ka sɛgɛsɛgɛliw kɛ sani a ka bange i n’a fɔ:

• Amniocentesis : O ye ka denso kɔnɔji dɔ ta ka a sɛgɛsɛgɛ.
• Chorionic villus sampling : O ye ka farikolokisɛw ta ka bɔ denso kɔnɔ ka u sɛgɛsɛgɛ.

A ka ca a la nin bana in bɛ sɔrɔ san joli kɔnɔ?

cɛden fanba bɛ sɔrɔ kalo 35-37 ɲɔgɔn na . Npogotigininw bɛ se ka sɔrɔ dɔɔni kɔfɛ, u si bɛ kalo 42 ɲɔgɔn na . Nka, aw bɛ se ka taamasiɲɛ dɔw kɔlɔsi kabini kalo 12.

Dɔgɔtɔrɔ bɛ se ka ɲininkali jumɛnw kɛ walasa ka dɛmɛ don ka bana in sɛgɛsɛgɛ?

Sani aw den ka dɔgɔtɔrɔ walima a ka jamu ladilikɛla ka yamaruya di ka Fragile X Syndrome sɛgɛsɛgɛli kɛ, u bɛ se ka ɲininkaliw kɛ aw la i n’a fɔ ninnu:

• Aw ye taamasiɲɛ jumɛnw kɔlɔsi aw den na?
• I den bɛ fɛn kuraw dege cogo di?
• Yala i den bɛ maloya wa?
• Yala sunɔgɔ gɛlɛya bɛ aw den na wa?
• Yala i den bɛ jɔrɔ tuma bɛɛ wa?
• Yala aw den b’a yɛrɛ tanga ɲɛmajɔli ma wa?
• Yala fɛn dɔw bɛ aw den fari la minnu ɲɛ tɛ deli ka kɛ wa?
• I den ka kuma se bɛ cogo di?

Yala Fragile X Syndrome bɛ se ka sɔrɔ balikuya waati la wa?

Hali ni a ka ca a la, bana min bɛ wele ko Fragile X Syndrome, o bɛ sɔrɔ denmisɛnniw na, bana fila wɛrɛw bɛ Fragile X denbaya kɔnɔ minnu bɛ balikuw minɛ. U ye:

• Fragile X-associé tremor/ataxia syndrome (FXTAS): A taamasiɲɛw ye balansi gɛlɛyaw ye, boloci, dusukunnataw basigibaliya, hakilijagabɔbaliya, miirili gɛlɛyaw, ani farikolo yɔrɔw sɔgɔsɔgɔninjɛ.
• Fragile X-associed primary ovarian insufficiency (FXPOI): A taamasiɲɛw ye den sɔrɔli dɔgɔyali ye, kɔnɔta gɛlɛya, kalolabɔ tɛ kɛ tuma bɛɛ walima a tɛ kɛ, ani kalolabɔ joona.

Ni nin taamasiɲɛ ninnu bɛ aw la, a ka fisa aw ka kuma dɔgɔtɔrɔ dɔ fɛ.

Fragile X Syndrome bɛ furakɛ cogo di?

Fura kɛrɛnkɛrɛnnen tɛ yen min bɛ wele ko Fragile X Syndrome.Nka, o bana in taamasiɲɛw bɛ se ka furakɛ. Aw den ka dɔgɔtɔrɔ bɛ se ka fura suguya caman di aw ma. Misali dɔw filɛ nin ye, minnu bɛ tila ka kɛɲɛ ni bana taamasiɲɛw ye:

• Epilepsie walima dusukunnataw basigibaliya:
• Karɔbɔni litiyɔmu
• Gabapentin (Neurontin®) ye .
• TDAH kama:
• Metilfenidati (Ritalin®, Concerta®) ani dextroanfetamine (Adderall®, Dexedrine®) .
• Venlafaxine (Effexor®) ni nefazodone (Serzone®) .
• Ni bana ye min bɛ wele ko obsessive-compulsive disorder (OCD):
• Fluoxetine (Prozac®) ye .
• Sertraline (Zoloft®) ani citalopram (Celexa®) .
• Sunɔgɔ gɛlɛyaw kama:
• Trazodone (Desyrel®) ye fura ye.
• Melatonin (Melatonin) ye

Nin ye furaw lisɛli fitinin dɔrɔn ye aw ka dɔgɔtɔrɔ bɛ se ka minnu di aw ma. Aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ fura kelen-kelen bɛɛ kɔlɔlɔw ni gɛlɛyaw kan minnu bɛ se ka sɔrɔ.

Ka fara furaw kan, dɔgɔtɔrɔ ka teli ka hakiliɲagami furakɛli laadi , o ye furakɛli suguya dɔ ye min bɛ den dɛmɛ ka ɲɛnamaya kɛ ni bana in ye ani k’a ka kɛwalew kunbɛn.

Fragile X Syndrome bɛ mɔgɔ minnu na, olu ka siniɲɛsigi ye mun ye?

Fragile X Syndrome bɛ mɔgɔ dɔw la, olu bɛ se ka balo u yɛrɛ ma. Kɔlɔsiliw y’a jira ko Fragile X bɛ npogotiginin 10 o 10 la, 4 ɲɔgɔn ani cɛden 10 o 10 bɛ bonya ka kɛ yɛrɛmahɔrɔnya ye kosɛbɛ. Npogotigininw ka teli ka:

• Gafew kalanni ni hakilina kuraw ni daɲɛ kuraw ye.
• Kumasen gɛlɛnw fɔli.
• Kuma ni teliya ye min bɛ kɛ cogo la min bɛ bɛn.

A ka ca a la, bana min bɛ wele ko Fragile X syndrome, o ka jugu cɛdenw ma. Fragile X bɛ npogotiginin 20 o 20 la, 8 ɲɔgɔn mago tɛ dɛmɛ na don o don baaraw la. Nka cɛden 20 o 20, 1 dɔrɔn de b’o kɛ. Hali ni npogotigi caman bɛ lise kalan ban, cɛden fanba tɛ o kɛ. Fragile X bɛ muso minnu na, olu tilancɛ ɲɔgɔn bɛ baara kɛ waati dafalen na, nka cɛden 10 o 10, 2 dɔrɔn de bɛ baara kɛ.

Yala ne den bɛ se ka taa tilefɛla/lakɔli la wa?

Ɔwɔ, nka a bɛ se ka kɛ ko aw den mago bɛ sigiyɔrɔ kɛrɛnkɛrɛnnen na tilefɛla walima lakɔliso la. Lakɔli don ni kalanso yɔrɔ dɔw bɛ se ka ladilan ka kɛɲɛ n’u magow ye. I den karamɔgɔ bɛ se ka yɛlɛma dɔw kɛ sigida ni kalanbolodacogo la.

Yɛlɛma minnu bɛ tali kɛ sigida lamini na:

• Ka mankan nɔgɔli to a hakɛ dɔgɔyalen na.
• Ka yeelen dabɔlen to a la.
• Ka i yɛrɛ tanga yɔrɔw ma minnu falen don mɔgɔw la.

Yɛlɛma minnu bɛ tali kɛ kalanbolodalen na:

• Baara kɛ ni fɛn yetaw ye i n’a fɔ ja, ɲɛw kulɛriw ani jaw.
• denmisɛnw dɛmɛni ka kalan kɛ ni baara kɛli ye ni fɛnw ye minnu ka di u ye kosɛbɛ .
• ka den bilasira ka baara kɛ kulu fitininw kɔnɔ .

Aw ye aw jija ka lakɔliso ladɔnniya ko Fragile X Syndrome bɛ aw den na. Kuma karamɔgɔ fɛ u mago kɛrɛnkɛrɛnnenw kan. Aw bɛ se fana ka taa lakɔli hakililabaarakɛla dɔ fɛ ani/walima ladilikɛla dɔ fɛ. U bɛ baara kɛ ni denmisɛnw ye minnu si tɛmɛna san 3. Aw bɛ se ka kuma dɔgɔtɔrɔ kɛrɛnkɛrɛnnen wɛrɛ minnu fɛ, olu ye:

• Baarakɛlaw ka furakɛlikɛlaw
• Taamacogo furakɛlikɛlaw
• Kuma-kanko banaw dɔnbagaw
• Sosiyete baarakɛlaw

Aw ye aw ka sigida lakɔlisow ni kɛnɛyabaarakɛlaw ɲininka walasa u ka kunnafoni wɛrɛw sɔrɔ o ko la.

Fragile X Syndrome bɛ mɛn waati joli kɔnɔ? A si hakɛ ye mun ye?

Fragile X Syndrome ye bana ye min bɛ sɔrɔ a si bɛɛ la. Fura kɛrɛnkɛrɛnnen tɛ a la.

Nka, Fragile X Syndrome taamasiɲɛ si tɛ mɔgɔ ka ɲɛnamaya bila farati la. O la, o mɔgɔw si hakɛ bɛ tali kɛ mɔgɔ gansan ta la.

Yala Fragile X Syndrome bɛ se ka bali wa?

Ayi, Fragile X Syndrome ye bana ye min bɛ sɔrɔ jamu fɛ, wa a tɛ se ka bali. Ni aw b’a fɛ ka kɔnɔ ta, walima ni aw kɔnɔma don kaban, a ka ɲi aw ka kuma jamu ladilikɛla dɔ fɛ, farati min bɛ aw den na ka nin bana in ciyɛn ta.

Ɲɛnamaya bɛ cogo di ni Fragile X Syndrome ye?

Fragile X Syndrome tɛ den bɛɛ minɛ cogo kelen na. Aw den ka dɔgɔtɔrɔso jɛkulu bɛ se ka hakilina ɲuman di aw ma, a bɛna nɔ bila aw den ni aw ka denbaya la cogo min na. Hali ni bana in fan dɔw bɛ se ka gɛlɛya, fɛn ɲuman caman fana bɛ yen. Misali la, ɲininikɛlaw ye Fragile X bɛ mɔgɔ minnu na:

• O bɛ dɛmɛ don.
• Sugu.
• Ka miiri mɔgɔ wɛrɛw la.
• Jòlimandi.
• A bɛ se ka ladege ka ɲɛ.
• Hakililajɛ yelen ni hakilijagabɔ kuntaalajan ka ɲi.
• Tulonkɛw ka di n ye wa n b’a ye k’u bɛ nisɔndiya.

Ne bɛ se ka ne terikɛ/denbaya kɔnɔmɔgɔ dɔ dɛmɛ cogo di min bɛ ni Fragile X Syndrome ye?

Aw ye kunnafoni sɔrɔ i n’a fɔ aw bɛ se cogo min na. Aw ye dɛmɛjɛkuluw ni sigida nafolomafɛnw ɲini minnu bɛ se ka aw n’u dɛmɛ. Ɲɛnamaya kɛcogo porogaramuw bɛ se ka bɛn. Dɔw bɛ bilasirali kɛ fɛnw kan i n’a fɔ:

• Sosiyete ka baara kɛtaw.
• Cɛnimusoko.
• Ɲɛnajɛ minnu bɛ kɛ.
• Ladamuni.
• Baara minnu bɛ kɛ.

A nafa ka bon kosɛbɛ aw ka aw den lafasa walasa a mago bɛ ladonni min na, a ka se k’o sɔrɔ ani ka ɲɛnamaya kɛcogo ɲuman sɔrɔ.

Tuma jumɛn na ne ka kan ka taa ni ne den ye dɔgɔtɔrɔso la?

Aw bɛ taa ni den ye denmisɛnw ka dɔgɔtɔrɔ fɛ ni aw ye Fragile X Syndrome taamasiɲɛw kɔlɔsi dɔrɔn. Aw kana mɛn, barisa aw ka baara kɛ joona, o nafa ka bon kosɛbɛ.

Ne ka kan ka ɲininkali jumɛnw kɛ dɔgɔtɔrɔ la?

Aw bɛ se ka ɲininkali dɔw kɛ aw ka dɔgɔtɔrɔ la ni aw bɛ baro kɛ aw ka bana sɛgɛsɛgɛli kan:

• Yala ne den ka kan ka taa dɔgɔtɔrɔso kɛrɛnkɛrɛnnen dɔ la wa?
• Ne den ka kan ka furakɛlikɛla sugu jumɛnw ye?
• Fragile X Syndrome ka jugu cogo di?
• Fura jumɛn bɛnnen don ne den ma?
• Ne bɛ se ka ne den dɛmɛ cogo di?
• Ne ka fɛɛrɛ minnu bɛ se ka kɛ joona joona, olu ye jumɛnw ye?
• Anw denbaya bɛ se ka ne den dɛmɛ cogo di?

Fragile X Syndrome sɛgɛsɛgɛli bɛ se ka gɛlɛya aw ni aw den ma. Yɛlɛma caman ni ladilanni caman daminɛ don. Fɛn minnu bɛ i n’a fɔ furakɛli, furaw, ani lakɔliso sigiyɔrɔw, olu ye i den ka ɲɛnamaya kɔnɔko dɔ ye sisan. K’aw to aw den dɛmɛni na, aw kana ɲinɛ aw yɛrɛ magow kɔ. Aw ye aw hakili to a la ko ni aw den ye Fragile X Syndrome sɔrɔ, o kɔrɔ ye ko aw fana bɛ faratiba la kɛnɛyako caman wɛrɛw la, i n’a fɔ degun ni kunkolodimi.

A laban na, fɛn minnu ka kan ka to an hakili la

O la, an ye kuma caman fɔ Fragile X Syndrome kan bi. Fɛn koloma dɔw filɛ nin ye minnu ka kan ka to an hakili la:

• Nin ye jamu bana ye , o kɔrɔ ye ko a bɛ sɔrɔ ciyɛn fɛ.
• Nin ye ɲɛnamaya bɛɛ ye , nka a taamasiɲɛw bɛ se ka kunbɛn.
• Bana sɛgɛsɛgɛli joona, furakɛli joona, ani furakɛli wajibiyalenw daminɛni nafa ka bon kosɛbɛ den ka yiriwali la.
• I n’a fɔ den, aw mago bɛ dɛmɛ na cogo min na. A ka gɛlɛn ka nin ko ninnu kunbɛn i kelen na.
• Hali ni gɛlɛyaw bɛ nin ko in na, o denmisɛnw fana bɛ ni fɛn ɲumanw ni seko caman ye.

N jigi b’a kan ko nin kunnafoni in bɛna aw dɛmɛ. Ni ɲininkali wɛrɛw bɛ aw fɛ, aw bɛ se ka kuma aw ka dɔgɔtɔrɔ fɛ.

` fragile x syndrome, fxs, jenɛtiki bana, yiriwali kɔtigɛ, hakiliɲagami, denmisɛnw ka kɛnɛya, kalanbaliya