Kodi mwana wanu nthawi zambiri amadwala malungo popanda chifukwa? Tiyeni tiphunzire za matenda a SAID (Systemic Autoinflammatory Diseases) awa!

Kodi mwana wanu nthawi zina amangotenga malungo popanda chimfine kapena matenda ena aliwonse? Kodi malungowo amabwera, atatha patatha masiku ochepa, kenako n’kubwereranso patatha masiku angapo? Makolo ena amakumana ndi zoterezi. Chifukwa chake lero tikambirana za chifukwa cha malungo chomwe chimachitika kawirikawiri komanso chovuta kupeza. Izi zimatchedwa SAIDs (Systemic Autoinflammatory Diseases) . Kale, izi zimatchedwa `(Periodic Fever Syndromes)` kapena `(Recurrent Fever Syndromes)`.

Kodi ma SAID awa ndi chiyani? Tiyeni timvetse mosavuta!

Mwachidule, ma SAID ndi gulu la matenda omwe amayamba chifukwa cha vuto la kusowa bwino kwa chitetezo chamthupi kapena vuto la chitetezo chamthupi . Pankhaniyi, popanda matenda akunja (monga kachilombo kapena mabakiteriya), thupi lathu limangoyambitsa kutupa. Zimakhala ngati chitetezo chamthupi lathu chikupitirira muyeso.

Taganizirani izi, tili ndi gulu la asilikali mkati mwa matupi athu (ndiko kuti chitetezo cha mthupi). Ntchito yawo ndi kulimbana ndi majeremusi omwe amayambitsa matenda akalowa. Koma m'thupi la munthu amene ali ndi matenda a SAID, asilikaliwa nthawi zina amangokwiya kwambiri ndipo amayambitsa mavuto m'thupi.

Tsopano mwina mukudabwa ngati izi ndi zina monga `(matenda a autoimmune)` (ndiko kuti, matenda a autoimmune). Mwachitsanzo, `(rheumatoid arthritis)` kapena `(lupus)` ndi ofanana. Ayi, izi ziwiri ndizosiyana pang'ono. Mu matenda a autoimmune, chomwe chimachitika ndichakuti chitetezo chamthupi chomwe chatengedwa kapena chosinthika chimaukira maselo ake athanzi molakwika. Koma mu SAIDs, vuto lili ndi chitetezo chamthupi chobadwa nacho.

Matenda a SAID ndi osowa kwambiri kuposa matenda a autoimmune. Ambiri mwa iwo ndi obadwa nawo , zomwe zikutanthauza kuti amayamba chifukwa cha kusintha kwa majini kapena mtundu wina.

Matenda a SAID nthawi zambiri amayamba ali mwana kapena ali mwana . Koma sizili choncho nthawi zonse. Mwana wanu akhoza kukhala ndi nthawi zina kapena kugwidwa ndi malungo ndi zizindikiro zina. Mwana wanu akhoza kukhala wopanda zizindikiro zilizonse pakati pa matendawa. Palibe mankhwala a SAID. Komabe, pali mankhwala omwe angathandize kuchepetsa zizindikiro nthawi zambiri.

Kodi mitundu ikuluikulu ya SAIDs ndi iti?

Ofufuza tsopano apeza mitundu pafupifupi 60 ya ma SAID, ndipo ena akupezedwa. Tiyeni tiwone mitundu ina yodziwika bwino.

• Matenda a Family Mediterranean Fever (FMF): Uwu ndi matenda ofala kwambiri omwe amabadwa nawo m'majini ndipo amabwerezabwereza. Angayambitse kutupa kowawa m'mimba, pachifuwa, ndi m'malo olumikizirana mafupa a mwana .
• Malungo a nthawi ndi nthawi, aphthous-stomatitis, pharyngitis, adenitis (PFAPA): Izi nthawi zambiri zimayamba mwa ana aang'ono asanakwanitse zaka 4. Matendawa amatha kutha mwadzidzidzi akakwanitsa zaka 10.
• Matenda a tumor necrosis factor receptor-associated periodic syndrome (TRAPS): Izi zitha kuchitika ali mwana, wachinyamata, ndipo nthawi zina ngakhale munthu wamkulu.
• Kusowa kwa Mevalonate kinase (MKD): Poyamba kunkatchedwa hyper-IgD syndrome, ndipo nthawi zambiri izi zimayamba mwa ana osakwana chaka chimodzi.
• Matenda otupa omwe amabwera chifukwa cha NLRP3: Izi kale zinkatchedwa cryopyrin-associated periodic syndromes (CAPS). Pali mitundu ina itatu mkati mwa izi.
• Matenda a Adult-onset Still's (AOSD): Uwu ndi mtundu wa matenda a nyamakazi a achinyamata omwe amayamba chifukwa cha matenda a JIA (systemic juvenile idiopathic arthritis).
• Matenda a granulomatous omwe amagwirizana ndi NOD-2 (Blau syndrome): Izi nthawi zambiri zimayamba asanakwanitse zaka 4. Zimakhudza kwambiri khungu, maso, ndi mafupa a mwana.

Kodi zizindikiro za SAIDs ndi ziti? Kodi timazizindikira bwanji ?

Zizindikiro za SAID nthawi zambiri zimayamba ali ana. Chizindikiro chodziwika bwino komanso chodziwika bwino ndi malungo nthawi ndi nthawi . Anthu nthawi zambiri amakhala opanda zizindikiro pakati pa nthawi ya matendawa. Komabe, pakhoza kukhala zizindikiro zina zomwe zimagwirizana ndi mtundu uliwonse wa SAID.

Tiyeni tiwone zizindikiro zenizeni za mitundu ingapo ya SAID yomwe takambirana pamwambapa:

• FMF: Izi zingayambitse ululu waukulu m'mimba mwa mwana, pachifuwa, ndi m'malo olumikizirana mafupa, pamodzi ndi kutupa . Nthawi zina, ziphuphu zimatha kubuka m'miyendo kapena m'mapazi. Tangoganizirani, mwana mwadzidzidzi amayamba kupweteka m'mimba ndi malungo. Makolo akamada nkhawa n'kupita naye kuchipatala, angaganize kuti ndi appendicitis. Koma kenako zimachepa n'kubwereranso patatha masiku angapo.
• PFAPA: Izi zingayambitse zizindikiro monga kupweteka pakhosi, zilonda pakamwa, komanso kutupa kwa ma lymph nodes m'khosi .
• MISAMBO: Izi zingayambitse kuzizira, kupweteka kwa minofu pachifuwa ndi m'manja , komanso kutupa kofiira komwe kumayamba m'manja ndi m'miyendo ndikufalikira m'thupi lonse.
• MKD: Mu izinsoMungamve kudwala chifukwa cha kuzizira, mutu, kupweteka m'mimba, kusowa chilakolako cha chakudya, komanso zizindikiro zofanana ndi chimfine.
• Matenda a NLRP3: Izi zingayambitse zizindikiro monga ziphuphu pakhungu, mutu, kufooka, kupweteka kwa mafupa, ndi maso ofiira (conjunctivitis) .
• AOSD: Imeneyi ndi vuto lomwe nthawi zambiri limayambitsa ziphuphu pakhungu, kupweteka kwa mafupa, ndi kupweteka kwa minofu . Anthu ena amathanso kumva kupweteka pakhosi, kupweteka m'mimba, kutopa kwambiri, komanso kupweteka kwa thupi.
• Matenda a Blau: Izi zingayambitse zilonda pakhungu pa manja, miyendo, kapena thupi la mwana wanu . Zingayambitsenso kupweteka kwa mafupa ndi kupweteka kwa maso .

N’chifukwa chiyani ma SAID amenewa amapezeka? Kodi zifukwa zake ndi ziti?

Matenda ambiri a SAID ndi matenda a majini . Izi zikutanthauza kuti, matenda aliwonse amayamba chifukwa cha kusiyana kwa majini enaake.

Tiyeni tiwone majini omwe amakhudza mitundu ingapo ikuluikulu ya SAID:

• FMF: Izi zimachitika chifukwa cha jini yotchedwa `(MEFV gene)`. Jini iyi imaphunzitsa momwe mungapangire puloteni yotchedwa `(pyrin)`.
• PFAPA: Chifukwa chenicheni cha izi sichinapezekebe .
• MISAMBO: Izi zimachitika chifukwa cha jini yotchedwa `(gene ya TNFRSF1A)`. Izi ndi zomwe zimapereka malangizo opangira puloteni yotchedwa `(cholandirira chotupa cha tumor necrosis - TNFR)`.
• MKD: Chifukwa cha izi ndi jini yotchedwa `(MVK gene)`. Izi zimalangiza kupanga puloteni yotchedwa `(mevalonic kinase)`.
• Matenda a NLRP3: Izi zimachitika chifukwa cha jini yotchedwa `(jini la NLRP3)`. Izi zimapereka malangizo opangira puloteni yotchedwa `(cryopyrin)`.
• AOSD: Chifukwa chenicheni cha izi sichinapezekebe .
• Matenda a Blau: Izi zimachitika chifukwa cha jini yotchedwa `(NOD2 gene)`. Izi zimalangiza kupanga puloteni yotchedwa `(NOD2)`.

Kodi ma SAID awa angayambitse mavuto ena?

Inde, izi zingayambitse mavuto ngati sizikuchiritsidwa bwino . Ngati kutupa kukupitirira m'thupi, kungayambitse matenda otchedwa ``amyloidosis``. Izi zikutanthauza kuti, mtundu wina wa mapuloteni umayikidwa mu impso zathu. Izi zingayambitse kuwonongeka kosatha kwa impso . Ichi ndichifukwa chake ndikofunikira kuzindikira matendawa msanga ndikupeza chithandizo.

Kodi dokotala amazindikira bwanji vuto la SAIDs?

Ndipotu, kupeza matenda otupa okhawa kungakhale kovuta pang'ono , chifukwa zizindikiro zake zimatha kufanana ndi matenda ena akuluakulu monga lupus kapena khansa monga lymphoma. Chifukwa chake, ndikofunikira kuonana ndi dokotala yemwe ali ndi maphunziro apadera a matenda otupa, katswiri wa nyamakazi, kuti adziwe bwino ndikusamalira vuto la mwana wanu.

Dokotala wa nyamakazi wa mwana wanu adzagwiritsa ntchito zinthu zingapo kuti adziwe matenda a SAID. Iye adzakufunsani za zizindikiro za mwana wanu komanso ngati pali wina aliyense m'banja mwanu amene ali ndi matendawa (mbiri ya banja). Dokotala angaganize kuti mwana wanu akhoza kukhala ndi matenda a malungo nthawi ndi nthawi ngati:

• Ngati mwana amadwala malungo pafupipafupi .
• Ngati wina m'banjamo ali ndi mbiri ya malungo otere pafupipafupi .
• Ngati mwanayo ali m'gulu la anthu omwe nthawi zambiri amadwala malungo ngati amenewa .

Ndi mayeso ati omwe akuchitidwa pa izi?

Kuti atsimikizire matendawa, dokotala wa nyamakazi wa mwana wanu angakulangizeni mayeso angapo. Izi zingaphatikizepo:

• Mayeso a labu: Mayeso monga ``C-reactive protein (CRP)`` ndi ``complete blood count (CBC)`` angagwiritsidwe ntchito poyesa kutupa m'thupi. Mayesowa amakhala ndi zotsatira zabwino pa nthawi ya "fever" ndipo amabwerera mwakale pamene "insection" yatha.
• Kuyesa mkodzo: Kuyesa mapuloteni a mkodzo kungachitike kuti muwone ngati pali mapuloteni ochulukirapo mu mkodzo. Mu MKD, kuyesa mkodzo komwe kumayang'ana ma organic acid (ma acid okhala ndi atomu imodzi ya kaboni) kungawonetse kuchuluka kwa mevalonic acid.
• Kuyesa majini: Izi zitha kuwona mitundu yosiyanasiyana ya majini. Komabe, ana ena omwe ali ndi matenda a SAID sangapeze mitundu yosiyanasiyana ya majini, zomwe zingayambitse zotsatira zoyipa.

Kodi mankhwala a SAID awa ndi otani?

Chithandizo cha SAIDs chimasiyana malinga ndi mtundu ndi kuopsa kwa vutoli . Palibe mankhwala a matendawa. Komabe , zizindikiro za mwana wanu nthawi zambiri zimatha kuchepetsedwa ndi mankhwala . Ngati mwana wanu agwidwa ndi matendawa kangapo pachaka, mutha kumupatsa mankhwala ochepetsa ululu monga mankhwala oletsa kutupa (NSAIDs) omwe si a steroidal kuti achepetse zizindikiro zake. Komabe, ngati vutoli ndi lalikulu kwambiri, dokotala wanu angakupatseni njira zina zochiritsira.

Nazi zina mwa izo:

• FMF: Mankhwala otchedwa `(colchicine)` angagwiritsidwe ntchito poletsa izi. Izi zimachepetsa kutupa. Ngati mwana sangathe kumwa colchicine, mankhwala amtundu wa `(biologic)` otchedwa `(canakinumab)` angayesedwe.
• PFAPA: Ma steroids (nthawi zambiri prednisone) angaperekedwe kuti afupikitse nthawi ya "kuukira" kwa PFAPA. Mwa ana ena, cimetidine, mankhwala ogwiritsidwa ntchito pochiza zilonda zam'mimba, angathandizenso kuchepetsa zizindikiro.
• MISALA: Mankhwala otchedwa ``canakinumab'' nthawi zambiri amagwira ntchito pa izi. Komanso, zizindikiro zimatha kuchepetsedwa ndi mankhwala oletsa kutupa omwe dokotala wakupatsani, monga ``glucocorticoids''.
• MKD:Canakinumab ndi mankhwala othandiza a MKD. Kupereka mankhwala a NSAID kapena ma steroids panthawi ya "kuukira" kungathandizenso.
• Matenda a NLRP3: Mankhwala oletsa chitetezo chamthupi monga canakinumab, rilonacept, ndi anakinra amagwiritsidwa ntchito bwino pa izi.
• AOSD: Mitundu yosiyanasiyana ya mankhwala oletsa kutupa imagwiritsidwa ntchito pa AOSD. Zitsanzo zake ndi monga ma steroid, mankhwala oletsa kupweteka kwa minofu (DMARDs), ndi mankhwala a biologic.
• Matenda a Blau: Kutengera ndi zizindikiro za mwana wanu, angayese mankhwala oletsa chitetezo chamthupi, zoletsa za tumor necrosis factor (TNF), ndi/kapena mankhwala a maso.

Kodi zinthu za SAID izi ndi zokhazikika? Kapena zidzatha?

Matenda ena otupa okha ndi a moyo wonse . Ena amatha kukhalapo kwa zaka zingapo ndipo amatha akamakula. Matenda ena amatha kukhalapo kwa moyo wonse, koma pakapita nthawi, kuchuluka ndi kuopsa kwa matendawa kungachepe. Dokotala wa mwana wanu angakupatseni zambiri zokhudza matenda a mwana wanu.

Kulera mwana yemwe ali ndi matenda otupa thupi kungakhale kovuta. Ngati mwakhala ndi SAID, mungagwiritse ntchito zomwe mwakumana nazo kuti muthandize bwino kusamalira mwana wanu. Mukhozanso kugwiritsa ntchito zomwe mwakumana nazo kuti muthandize mwana wanu kuzolowera moyo wake wonse.

Chofunika kwambiri ndikupempha chithandizo kuchokera kwa akatswiri odziwa bwino za matenda a SAID. Madokotala otere angathandize kuchepetsa zizindikiro za mwana wanu ndikumuthandiza kukhala ndi ubwana wabwino kwambiri.

Uthenga Womaliza Wopita Nawo Kunyumba

Kotero, ndikukhulupirira kuti muli ndi lingaliro lina la ma SAID omwe takambirana lero. Kumbukirani, ngati mwana wanu ali ndi malungo obwerezabwereza, osadziwikiratu, lankhulani ndi dokotala za izi . Musangonyalanyaza, kuganiza kuti ndi zachilendo.

• Ma SAID ndi gulu la matenda omwe nthawi zambiri amayambitsa malungo ndipo amayamba chifukwa cha vuto la chitetezo chamthupi.
• Izi nthawi zambiri zimakhala za majini ndipo zimayamba ali aang'ono.
• Ngakhale kuti palibe mankhwala ochiritsira matendawa, pali mankhwala omwe angathe kuchepetsa zizindikiro zake.
• Ndikofunikira kupeza matenda oyenera ndi chithandizo kuchokera kwa dokotala waluso (Rheumatologist).
• Ngati chithandizo chayamba msanga, mavuto monga amyloidosis angapewedwe ndipo mwanayo akhoza kukhala moyo wabwinobwino.

Ngati muli ndi mafunso ena okhudza izi, musazengereze kufunsa dokotala wa banja lanu kapena dokotala wa ana.

` SAIDs, Matenda Odzipha Okha, Malungo Omwe Amafala, Matenda a Majini, Malungo mwa Ana, Chitetezo cha Mthupi, Rheumatologist