Susac Syndrome ye mun ye? An ka kuma o kan cogo nɔgɔman na.

Yala i bɛ barika sɔrɔ kunkolodimi, hakilijagabɔbaliya, ani fɛn dɔ yeli ni i ka mɛnni yeli dɔɔni wa? Laala o kow bɛ se ka kɛ waati kelen na. A bɛnnen don an ka siran ni o taamasiɲɛ suguw barika banna. Bi an bɛna kuma bana dɔ kan min man teli ka kɛ, min bɛ se ka nin taamasiɲɛ suguw lase mɔgɔ ma, nka a ma dɔn kosɛbɛ an ka jamana kɔnɔ. O ye Susac Syndrome ye.

Susac Syndrome ye mun ye nɔgɔya la?

N’an y’a fɔ cogo nɔgɔman na, Susac Syndrome ye bana ye min bɛ sɔrɔ farikolo tangacogo fɛ. Miiri an farikolo tangacogo la i n’a fɔ an ka jamana kɛlɛbolo. A ka baara kunba ye k’an tanga banakisɛw ma minnu bɛ bana bila mɔgɔ la. Nka tuma dɔw la, o cogoya in bɛ fili fitinin dɔ kɛ. O kɔfɛ, sanni a ka bin juguw kan ka bɔ kɛnɛma, a bɛ daminɛ ka bin an yɛrɛ farikolo selilɛri ɲumanw kan. An bɛ min wele ko bana minnu bɛ sɔrɔ farikolo tangalanw fɛ.

Susac Syndrome (Susac Syndrome) la, an farikolo tangalanw bɛ bin joli sira misɛnninw kan minnu bɛ kunsɛmɛ na, ɲɛkisɛw la ani ɲɛkisɛw la . O binkanni in bɛ kɛ sababu ye k’o joli siraw funu, ka joli bɔli dɔgɔya walima k’a bali pewu u fɛ. O de bɛ bana in taamasiɲɛw bila mɔgɔ la.

Nin bana in bɛ sɔrɔ yɔrɔ jumɛn na kosɛbɛ?

Nin bana in bɛ farikolo yɔrɔ saba de minɛ kosɛbɛ: kunsɛmɛ, ɲɛw ani tulo.

Nin ye bana ye min man ca kosɛbɛ. O la, a ka gɛlɛn k’a fɔ tigitigi mɔgɔ hakɛ min b’a sɔrɔ. Tuma dɔw la, a taamasiɲɛw bɛ tali kɛ bana wɛrɛ la min bɛ wele ko Sclerose Multiple (MS), o la hali dɔgɔtɔrɔw bɛ se ka bana fila ninnu ɲagami tuma dɔw la. O la, a bɛ se ka waati dɔ ta tuma dɔw la walasa ka bana sɛgɛsɛgɛcogo ɲuman sɔrɔ.

Susac Syndrome taamasiɲɛw ye jumɛnw ye?

A taamasiɲɛw bɛ se ka ɲɔgɔn ta mɔgɔ kelen-kelen bɛɛ la, nka u ni fɛnba saba minnu kofɔra ka tɛmɛ, olu bɛ tali kɛ ɲɔgɔn na. An k’a lajɛ u ye min ye.

O jogo ninnu bɛ nɔ bila i la cogo di?

Nin taamasiɲɛ ninnu tɛ kɛ cogo kelen na bɛɛ la. Mɔgɔ dɔw bɛ o sɔrɔ siɲɛ kelen dɔrɔn u ka ɲɛnamaya kɔnɔ. Dɔ wɛrɛw fɛ, a taamasiɲɛw bɛ na ka taa, ka sɔrɔ ka segin... ani o ɲɔgɔnnaw. A ka ca a la, a taamasiɲɛw bɛ se ka bonya ani ka dɔgɔya san damadɔ kɔnɔ. Mɔgɔ damadɔ dɔrɔn de bɛ o saba bɛɛ taamasiɲɛw sɔrɔ waati kelen na ni bana in sɔrɔla.

Mun na Susac Syndrome bɛ sɔrɔ?

O sababu tigitigi ma Dɔn fɔlɔ. Nka an b’a dɔn ko farikolo tangalanw ka bana don. I n’a fɔ an y’a fɔ cogo min na ka tɛmɛ, an yɛrɛ ka farikolo tangalanw bɛ bin joli-sira-funu misɛnninw kɔnɔ farikolokisɛw kan minnu bɛ an kunkolo la, an ɲɛkisɛw la ani an tulo kɔnɔna na. O binkanni in bɛ kɛ sababu ye k’o farikolokisɛw funu. O kɔ, o joli siraw bɛ se ka datugu yɔrɔ dɔ la walima pewu. Ni o kɛra, o farikolo yɔrɔw tɛ oksizɛni ni balofɛnw sɔrɔ u mago bɛ minnu na. O de bɛ kɛ sababu ye ka bana taamasiɲɛ minnu kofɔ ka tɛmɛ.

Yala nin ye bana ye min bɛ sɔrɔ cɛya la wa? Jɔn de bɛ faratiba la?

Ayi, dalilu si tɛ yen min b’a jira ko nin ye bana ye min bɛ sɔrɔ cɛya la. Nka , musow ka teli ka nin bana in sɔrɔ ka tɛmɛ cɛw kan siɲɛ saba ɲɔgɔn. A ka ca a la, bana taamasiɲɛw bɛ daminɛ san 20 ni san 40 cɛ.

Gɛlɛya jumɛnw bɛ se ka sɔrɔ bana in na?

Ɲɛw ni tulo tiɲɛni minnu bɛ sɔrɔ joli siraw datugulen fɛ , olu bɛ se ka kɛ tuma bɛɛ tuma dɔw la.O kɔrɔ ye ko a bɛ se ka kɛ ko a bɛ se ka yeli ni mɛnni tiɲɛ kudayi. Wa, hali ni a man teli kosɛbɛ, bana dɔ fana bɛ se ka sɔrɔ min bɛ wele ko hakiliɲagami, hakilijagabɔ bɛ ban pewu min na.

Dɔgɔtɔrɔ bɛ nin bana in sɛgɛsɛgɛ cogo di? (Sɛgɛsɛgɛli) .

Aw ka dɔgɔtɔrɔ bɛna sɛgɛsɛgɛli caman kɛ walasa ka bana in dɔn.

• Farikolo-sɛgɛsɛgɛli
• Sɛgɛsɛgɛli min bɛ kɛ ni hakili ye
• Ɲɛdɔgɔtɔrɔso sɛgɛsɛgɛli

Ka fara o kan, aw bɛ se fana ka sɛgɛsɛgɛliw kɛ i n’a fɔ ninnu walasa ka kunnafoni caman sɔrɔ aw ka bana taamasiɲɛw kan:

• Sugunɛ ka jateminɛ (MRI) : O bɛ kɛ sababu ye dɔgɔtɔrɔ ka yɔrɔ finmanw ɲini minnu bɛ wele ko ‘snowball lesions’ kunsɛmɛ yɔrɔ fila bɛ ɲɔgɔn sɔrɔ yɔrɔ min na (corpus callosum). Ninnu ye Susac Syndrome taamasiɲɛ kɛrɛnkɛrɛnnen ye.
• Fluorescein Angiography (Fluorescein Angiography) : Nin ye sɛgɛsɛgɛli kɛrɛnkɛrɛnnen ye min bɛ joli siraw sɛgɛsɛgɛ ɲɛkisɛ la. A bɛ se ka joli siraw datugulen fɛn o fɛn dɔn.
• Audiogramme: Nin ye mɛnni sɛgɛsɛgɛli ye. A b’a lajɛ ni i bɛ se ka mankan dɔgɔmanw mɛn ani ni kuma faamuyali ka gɛlɛn i ma.

O furakɛcogo jumɛnw bɛ yen?

Furakɛli kunba ye ka an farikolo tangacogo kɔlɔsi, farikolo tangacogo min tɛ baara kɛ. Banakisɛfagalanw bɛ kɛ o la. Misali dɔw ye ninnu ye:

• Kɔritikositɛri (misali la, piridinizɔni) .
• Immunoglobuline (IVIG) min bɛ kɛ joli sira fɛ .
• Mikofenolati (mikofenolati).
• Azatiyopirini (azatiyoprine).
• Sikilofosfamidi (cyclophosphamide) (cyclophosphamide).
• Rituximab (rituximab) ye

O fura ninnu bɛ se ka di farikolo ma cogo caman na. Dɔw bɛ ta i n’a fɔ furakisɛ walima furakisɛ. Dɔw bɛ kɛ pikiri ye. Dɔw fana bɛ di jolisira fɛ (IV) saline fɛ. Nin fura ninnu bɛ baara kɛ ni farikolo tangalanw dɔgɔyali ye minnu bɛ baara kɛ kojugu.

Aw ye furakɛli, kɛnɛya ani ɲɛnamaya kɛcogo dɔn

Yala furakɛli kɔlɔlɔ dɔw bɛ yen wa?

Ɔwɔ, i n’a fɔ fura bɛɛ, nin fura in bɛ se ka kɔlɔlɔ suguya caman lase mɔgɔ ma. O la, aw bɛ kuma aw ka dɔgɔtɔrɔ fɛ o ko la sani aw ka furakɛli daminɛ. Ni kɔlɔlɔ dɔw ye aw ye, aw bɛ dɔgɔtɔrɔ ladɔnniya o la.

A bɛna waati joli ta ka kɛnɛya furakɛli kɔfɛ?

Ni o dɔnna joona ani ni furakɛli daminɛna joona, a taamasiɲɛw bɛ se ka ɲɛ joona. Mɔgɔ dɔw bɛ bana siɲɛ kelen dɔrɔn. Dɔ wɛrɛw bɛ se ka kɛ ni ko kɛlenw ye minnu bɛ segin-ka-bɔ sanw kɔnɔ. Nka , ni farikolo tangalanw furakɛra ka ɲɛ, a kɔlɔlɔw bɛ dɔgɔya kosɛbɛ.

Ɲɛnamaya bɛna kɛ cogo di ni nin bana in ye? (Laɲini)

Mɔgɔ minnu bɛ furakɛli kɛ ni bana taamasiɲɛw bɔra dɔrɔn, olu ka ɲɛnamaya kɛcogo ka ɲi kosɛbɛ. O bɛ se ka tiɲɛni banbali bali kunkolo, ɲɛw ani tulo la. Gɛlɛya banbaliw i n’a fɔ yelikɛbaliya ani mɛnnikɛbaliya, olu man teli ka sɔrɔ. Nin tɛ bana ye min bɛ mɔgɔ ka ɲɛnamaya bila farati la, fo ni a man teli kosɛbɛ. Hali ni a bɛ se ka nɔ bila i ka ɲɛnamaya kɛcogo la, a tɛ nɔ bila i ka ɲɛnamaya la k’a ɲɛsin i yɛrɛ ma.

Bana in kunbɛncogo ani dɔgɔtɔrɔ ka kan ka taa waati min na?

Fɛɛrɛ kɛrɛnkɛrɛnnen tɛ yen min bɛ se ka Susac Syndrome kunbɛn. Nka, ni aw ye furakɛli bolodacogo labato aw ka dɔgɔtɔrɔ ye min di aw ma tigitigi, aw bɛ se ka bana taamasiɲɛw seginni dɔgɔya (flare-ups).

Ni aw ye nin fɛn ninnu dɔ ye, aw bɛ taa dɔgɔtɔrɔso la joona:

• Yɛlɛma donna ɲɛnayeli la
• Lamɛnni dɛsɛ
• Yɛlɛma donna seko la ka miiri walima ka hakili to a la
• Yɛlɛma donna kɛwalew walima mɔgɔya la

Ni bana in dɔnna joona, aw bɛ se ka to kɛnɛya la ka ɲɛ ani ka tiɲɛni banbali bali.

Ɲininkali minnu ka kan ka kɛ dɔgɔtɔrɔ la

• "Ne bɛ se ka segin ka na ne ka bana taamasiɲɛw ɲɛnabɔlen kɔfɛ wa?"
• "I bɛ furakɛli sugu jumɛn fɔ ne ye?"
• "Ne ka kan ka fura in ta fo waati joli ani cogo di?"
• "Fura in kɔlɔlɔ ye mun ye?"
• "Yala ne mago bɛna kɛ mɛnnikɛminɛnw na walima mɛnnikɛlan na wa?"

Susac Syndrome bɛ se ka nɔ bila aw ka don o don ɲɛnamaya la. A bɛnnen don ka siran ani ka jɔrɔ ni i dalen bɛ fɛn minnu na tuma bɛɛ, i n’a fɔ i yeli walima i ka mɛnni, olu barika banna. Tuma dɔw la, ka kuma hakili kɛnɛya ladilikɛla dɔ fɛ, o bɛ se ka kɛ lafiyaba ye. Aw ye aw hakili to a la ko a ka fisa aw ka a fɔ dɔgɔtɔrɔ ye ni aw ye bana taamasiɲɛw kɔlɔsi dɔrɔn, barisa gɛlɛyaw bɛ se ka sɔrɔ. Furakɛli teliya la, o bɛ se ka tiɲɛni banbali bali.