Yala farigan bɛ to den na kun tɛ a la wa? An ka kuma nin SAID ninnu kan (Bana minnu bɛ kɛ ni farikolojidɛsɛ ye) .

Yala i denmisɛnnin bɛ farigan dɔrɔn de sɔrɔ tuma bɛɛ wa? Yala a bɛ kɛnɛya farigan kɔfɛ tile damadɔ kɔnɔ, ka sɔrɔ ka farigan wɛrɛ sɔrɔ tile damadɔ kɔfɛ wa? Aw bɛ se k’aw yɛrɛ ɲininka mun na o bɛ kɛ ni banakisɛ walima banakisɛfagalan tɛ aw la. O bɛ se ka kɛ bana dɔ ye min man teli ka kɛ, n’o bɛ wele ko SAIDs (Systemic Autoinflammatory Diseases) , mɔgɔ caman ma min mɛn. Aw kana aw hakili ɲagami, an ka kuma o kan kuma nɔgɔmanw na ani ka fɛn bɛɛ faamu.

SAIDw ye mun ye? An k’a faamu cogo nɔgɔman na.

N’an y’a fɔ cogo nɔgɔman na, SAIDw ye banaw kulu ye minnu bɛ farigan bila mɔgɔ la tuma caman, ka segin-ka-bɔ, ka sɔrɔ banakisɛ si tɛ u la (i n’a fɔ banakisɛw walima banakisɛw). o sababu ye an den ka farikolo tangacogo bangenen baarakɛbaliya ye . O tun bɛ wele fɔlɔ ko ‘Sindrome périodique de fever’.

Sisan, n’a sɔrɔ i b’i yɛrɛ ɲininka, yala nin ye ‘bana ye min bɛ sɔrɔ farikolo tangacogo fɛ’ wa? An bɛ to ka banaw mɛn minnu bɛ sɔrɔ farikolo tangalanw fɛ i n’a fɔ sɔgɔsɔgɔninjɛ walima Lupus. Ayi, nin tɛ kelen ye.

Miiri k’a filɛ, lafasali kɛlɛbolo dɔ b’an farikolo kɔnɔ, n’o ye an farikolo tangacogo ye. O kɛlɛbolo in yɔrɔba fla bɛ yen:

1. Banakisɛfagalan bangenen : Nin ye kɛlɛbolo ye an bangera ni min ye, wa a de ye banakisɛ suguya bɛɛ kɛlɛ fɔlɔ.

2. Adaptive Immune System: Nin ye kɛlɛbolo ye min dege kɛrɛnkɛrɛnnenya la ka banakisɛ suguya caman kɛlɛ an bonyatɔ.

SAIDw la, gɛlɛya bɛ farikolo tangacogo bangenen de la . O farikolo tangalan bɛ jɔrɔ ka kɛlɛ daminɛ farikolo kɔnɔ k’a sɔrɔ jugu si tɛ a la. O kɛlɛ in nɔ ye funu ye farikolo la ani sumaya.

Nka an kumana bana minnu kan, olu minnu bɛ sɔrɔ farikolo tangacogo fɛ, gɛlɛya bɛ kɛlɛbolo la min bɛ se ka ladamu, n’o bɛ dege kɔfɛ. O kɛlɛbolo tɛ se ka selilu ɲumanw dɔn a yɛrɛ farikolo la, wa a bɛ binkanni daminɛ u kan.

SAIDw ka dɔgɔn kosɛbɛ ka tɛmɛ farikolo tangalanw ka banaw kan. A ka c’a la, u bɛ sɔrɔ jamu sababu fɛ, o kɔrɔ ye k’u bɛ sɔrɔ ciyɛn fɛ. A ka ca a la, nin taamasiɲɛ ninnu bɛ daminɛ ni den ka dɔgɔn kosɛbɛ , i n’a fɔ denmisɛnni walima denmisɛnninya waati. Den bɛ barika sɔrɔ ka bana dɔ sɔrɔ walima ka bana dɔ minɛ ni sumaya ni taamasiɲɛ wɛrɛw ye, a ka ca a la o bɛ ban tile damadɔ kɔnɔ. Den bɛ se ka kɛnɛya pewu ni a ma bana. Hali ni fura tɛ yen, furakɛli nafama dɔw bɛ yen minnu bɛ se ka bana taamasiɲɛw kunbɛn.

SAID suguya jɔnjɔnw ye jumɛnw ye?

Ɲininikalaw ye SAID suguya 60 ɲɔgɔn dɔn fɔlɔ, wa suguya kuraw bɛ ka sɔrɔ tuma bɛɛ. A suguya minnu ka ca kosɛbɛ, olu dɔw filɛ nin ye.

Nin bana ninnu taamasiɲɛ minnu ka teli ka ye, olu ye jumɛnw ye?

SAIDw taamasiɲɛba ni a ka ca kosɛbɛ , o ye sumaya segin-segin ye . Nka, ka fara sumaya kan, taamasiɲɛ wɛrɛw fana bɛ se ka kɛ ka kɛɲɛ ni bana suguya ye.

Mun na o bana ninnu bɛ kɛ? O sababu ye mun ye?

I n’a fɔ an y’a fɔ cogo min na ka tɛmɛ, SAID caman ye banaw ye minnu bɛ sɔrɔ jamu fɛ . O kɔrɔ ye ko nin bana ninnu bɛ sɔrɔ fɛn dɔ jiginni fɛ (variant) min bɛ sɔrɔ jamu kɛrɛnkɛrɛnnen dɔ la.

Mun bɛ se ka kɛ ni furakɛli bɛnnen ma kɛ?

Nin ye ko ye min nafa ka bon kosɛbɛ. A nafa ka bon ka nin bana in kunbɛn ni furakɛli kɛcogo ɲuman ye. Sabula, ni funu bɛ to farikolo la nin cogo la, o bɛ se ka kɛ sababu ye ka bana dɔ lase mɔgɔ ma min bɛ wele ko Amyloïdose . N’an y’a fɔ cogo nɔgɔman na, farikolojɔli dumuni suguya dɔ bɛ se ka bila an ka sugunɛ na, ka tiɲɛni banbali kɛ sugunɛ na. O la, a nafa ka bon kosɛbɛ ka bana in sɛgɛsɛgɛ ani k’a furakɛ joona.

Dɔgɔtɔrɔ bɛ nin bana in sɛgɛsɛgɛ cogo di?

Ni an bɛ se ka tiɲɛ fɔ, SAIDw sɛgɛsɛgɛli bɛ se ka gɛlɛya dɔɔni barisa a taamasiɲɛw bɛ se ka kɛ i n’a fɔ bana jugu wɛrɛw, i n’a fɔ lupus.

O la, min nafa ka bon kosɛbɛ, o ye ka taa dɔgɔtɔrɔso la min ka baara kɛrɛnkɛrɛnnen don nin bana suguya ninnu na. dɔgɔtɔrɔ min ka baara ɲɛsinnen bɛ banaw ma minnu bɛ tali kɛ kolotugudaw ni farikolo tangacogo la , o bɛ wele ko sɔgɔsɔgɔninjɛ furakɛla .

Aw ka dɔgɔtɔrɔ bɛna fɛn caman jateminɛ walasa ka bana sɛgɛsɛgɛ. A ka c’a la, a bɛna ɲininkali kɛ i den ka bana taamasiɲɛw la ani ni o bana in bɛ denbaya kɔnɔ. Aw ka dɔgɔtɔrɔ bɛ se ka sigasiga SAIDw la, kɛrɛnkɛrɛnnenya la ni:

• Ni farigan bɛ to den na.
• Ni denbaya kɔnɔ mɔgɔ dɔ ye banaw sɔrɔ minnu bɛ segin-ka-bɔ i n’a fɔ mura i n’a fɔ nin.
• Ikomi nin bana ninnu ka ca siya dɔw la, o fana bɛ jateminɛ.

Sɛgɛsɛgɛli jumɛnw bɛ kɛ?

Dɔgɔtɔrɔ bɛ se ka sɛgɛsɛgɛli caman kɛ walasa ka bana in dɔn.

• Joli sɛgɛsɛgɛli (Lab tests): Sɛgɛsɛgɛli i n’a fɔ C-reactive protein (CRP) ani CBC (Full Blood Count) bɛ se ka farikolo funu lajɛ. O hakɛw bɛ bonya bana waati, ka segin u hakɛ la ni farikolo kɛnɛyara.
• Sugunɛ sɛgɛsɛgɛli : A bɛ a lajɛ ni farikolojɔli dumuniw hakɛ cayara sugunɛ na. Bana dɔw la, i n’a fɔ MKD, sugunɛ sɛgɛsɛgɛli bɛ se ka asidi kɛrɛnkɛrɛnnenw dɔn.
• Jɛnkulu sɛgɛsɛgɛli: Nin sɛgɛsɛgɛli in bɛ se ka jamu fɛn falenw dɔn. Nka, tuma dɔw la, SAID bɛ se ka kɛ den dɔ la nka a bɛ se ka kɛ ko jamu sɛgɛsɛgɛli tɛ a dɔn. O la, hali ni sɛgɛsɛgɛli jaabi ma ɲɛ, a tɛ se k’a fɔ 100% ko bana tɛ yen.

O furakɛcogo jumɛnw bɛ yen?

SAIDw furakɛli bɛ bɔ bana suguya ni a juguya la. Hali ni nin bana ninnu tɛ se ka kɛnɛya pewu, furaw bɛ se ka a taamasiɲɛw kunbɛn kosɛbɛ.

• FMF: Fura dɔ bɛ kɛ o la min bɛ wele ko Colchicine . A bɛ dɔ bɔ funu na farikolo la. Ni o fura ma baara kɛ den ye, u bɛ se ka u ɲɛsin furaw ma i n’a fɔ Kanakinumab .
• PFAPA : Stɛroyidi minnu bɛ i n’a fɔ Prednisone , olu bɛ se ka di waati kunkuruni kɔnɔ walasa ka bana kuntaala dɔgɔya joona.
• JANW: KanakinumabFura in nafa ka bon kosɛbɛ. Ani fana, banakisɛfagalanw i n’a fɔ glucocorticoïdes, olu bɛ kɛ.
• MKD: Fura min tɔgɔ ye ko Canakinumab , o bɛ se ka kɛ nin fana na. AINE (dimimadafura) walima furakisɛw bɛ se ka dɛmɛ don bana waati.
• NLRP3 Banaw : Farikolo tangalanw i n’a fɔ Kanakinumab , Rilonacept , ani Anakinra bɛ kɛ ka ɲɛ o la.
• Blau ka bana : Ka kɛɲɛ ni a taamasiɲɛw ye, farikolo tangalanw, TNF balilanw ani ɲɛ furaw bɛ se ka kɛ.

Yala nin bana in bɛna kɛnɛya pewu wa?

SAID dɔw bɛ kɛ u ka ɲɛnamaya bɛɛ kɔnɔ. Nka, dɔw, i n’a fɔ PFAPA, olu bɛ se ka taa u yɛrɛ ma ni den bɛ kɔrɔbaya. Hali ni u ye ɲɛnamaya bɛɛ kɔnɔko ye, bana caya ni a taamasiɲɛw juguya bɛ se ka dɔgɔya waati tɛmɛnen kɔfɛ. Aw ka dɔgɔtɔrɔ bɛna kunnafoni kɛrɛnkɛrɛnnenw di aw ma aw den ka bana kan.

Nin bana in bɛ den min na, o ladonni bɛ se ka kɛ gɛlɛya ye. Nka ni dɔgɔtɔrɔ kɛrɛnkɛrɛnnenw ka dɛmɛ ye, aw bɛ se ka aw den ka bana taamasiɲɛw kunbɛn ani ka denmisɛnya ɲuman di a ma.