Kodi mwana wanu amadwala nthawi zonse? Zingakhale XLA (X-Linked Agammaglobulinemia). Tiyeni tikambirane!

Ngakhale nthawi zina timaganiza kuti ndi zachilendo kuti ana athu azidwala pafupipafupi, kwa ana ena izi zitha kukhala vuto lalikulu. Makamaka ngati mnyamata akudwala matenda a bakiteriya nthawi zonse, zitha kukhala chifukwa cha matenda osowa kwambiri a majini. Lero tikambirana za vuto lotere.

Kodi XLA (X-Linked Agammaglobulinemia) ndi chiyani?

Chabwino, kodi XLA (X-linked agammaglobulinemia) ndi chiyani? Mwachidule, ndi matenda a majini . Thupi lathu lili ndi gulu lankhondo lofunika kwambiri lolimbana ndi matenda, ndipo ndilo chitetezo chathu chamthupi. Mtundu wapadera wa selo mu dongosololi umatchedwa maselo a B. Maselo a B awa ndi omwe amapanga mapuloteni otchedwa ma antibodies kuti amenyane ndi matenda matupi athu akadwala. Ma antibodies awa amagwira ntchito ngati asilikali kuteteza dziko lathu.

Munthu amene ali ndi XLA (X-Linked Agammaglobulinemia) sapanga maselo a B awa moyenera. Kapena amapanga ochepa kwambiri. Ndiye, chimachitika ndi chiyani ngati simungathe kupanga ma antibodies? Mumadwala mosavuta ndipo nthawi zambiri mumadwala. Komanso, minofu m'thupi lathu yomwe imagwirizana ndi chitetezo chamthupi, monga ma lymph nodes , ma tonsils, ndi adenoids, simakula bwino, ndipo nthawi zina sizimapangika konse. Vutoli limapezeka kwambiri mwa anyamata . Tidzakambirana za chifukwa chake pambuyo pake.

Matendawa, otchedwa XLA (X-Linked Agammaglobulinemia), amadziwikanso ndi mayina ena:

• Bruton's agammaglobulinemia
• Congenital agammaglobulinemia
• Hypogammaglobulinemia

Komabe, dzina lakuti Hypogammaglobulinemia limagwiritsidwanso ntchito pa vuto lina lofanana. Limenelo ndi CVID (Common Variable Immunodeficiency) . CVID (Common Variable Immunodeficiency) nthawi zambiri si yoopsa ngati XLA (X-Linked Agammaglobulinemia), ndipo nthawi zambiri imapezeka akakula. Komabe, ana omwe ali ndi XLA (X-Linked Agammaglobulinemia) amapezeka asanakwanitse chaka chimodzi kapena ali aang'ono kwambiri.

Kodi kusiyana pakati pa XLA (X-Linked Agammaglobulinemia) ndi SCID (Severe Combined Immunodeficiency) ndi kotani?

Tsopano mwina mukudabwa ngati iyi ndi XLA (X-Linked Agammaglobulinemia) kapena vuto lalikulu la kusowa kwa chitetezo chamthupi lomwe mwina mudamvapo lotchedwa SCID (Severe Combined Immunodeficiency) . Ayi, pali kusiyana pang'ono pakati pa awiriwa. Mu XLA (X-Linked Agammaglobulinemia) , maselo a B omwe tidalankhula kale amakhudzidwa kwambiri. Mu SCID (Severe Combined Immunodeficiency) , maselo a T amakhudzidwa.Mtundu wina wofunikira wa maselo oteteza thupi otchedwa T-cells (nthawi zina maselo a B amathanso kukhudzidwa). Onsewa ndi matenda a majini omwe amafooketsa chitetezo cha mthupi ndipo nthawi zambiri amayambitsa matenda. Koma kusiyana kwakukulu pakati pa awiriwa ndi mtundu wa maselo omwe akhudzidwa.

Kodi XLA (X-Linked Agammaglobulinemia) ndi yofala bwanji?

Matendawa otchedwa XLA (X-Linked Agammaglobulinemia) ndi osowa kwambiri . Izi zikutanthauza kuti si matenda omwe anthu ambiri amadwala. Komabe, monga tanenera kale, amapezeka kwambiri mwa anyamata . Malinga ndi ziwerengero, pafupifupi mnyamata m'modzi mwa anyamata zikwi mazana awiri (200,000) amabadwa ndi XLA (X-Linked Agammaglobulinemia).

Kodi zizindikiro za XLA (X-Linked Agammaglobulinemia) ndi ziti?

Chifukwa ana omwe ali ndi XLA (X-Linked Agammaglobulinemia) ali ndi chitetezo chamthupi chosakwanira, ma lymph nodes awo, ma tonsils, ndi adenoids nthawi zambiri amakhala ang'onoang'ono kapena palibe . Izi zimapangitsa kuti azidwala matenda opatsirana pafupipafupi kuyambira ali aang'ono. Mwachitsanzo:

• Matenda a m'mapapo : Ichi ndi matenda a m'mapapo, omwe ndi machubu omwe amapita ku mapapo.
• Matenda a m'khutu (Otitis media) : Matenda a m'khutu lapakati.
• Sinusitis : Matenda a m'mphuno mozungulira mphuno.
• Chibayo : Matenda oopsa omwe amakhudza mapapo.
• Matenda a m'mimba : Zinthu monga kuvutika m'mimba ndi kutsegula m'mimba.

Koma ndikofunikira kukumbukira kuti ana omwe ali ndi XLA (X-Linked Agammaglobulinemia) nthawi zambiri samakhala pachiwopsezo chotenga matenda opatsirana ndi mavairasi (monga Cytomegalovirus (CMV) , RSV (Respiratory Syncytial Virus) , kapena matenda a bowa . Amavutika kwambiri ndi matenda a bakiteriya.

Kodi n’chiyani chimayambitsa XLA (X-Linked Agammaglobulinemia)?

Monga tanenera kale, XLA (X-Linked Agammaglobulinemia) ndi matenda a majini . Izi zikutanthauza kuti mwana amalandira kuchokera kwa mayi, bambo, kapena onse awiri. Tili ndi jini yotchedwa BTK gene m'thupi mwathu. Jini iyi imalangiza thupi lathu kupanga maselo a B. Tikudziwa kuti maselo a B amapanga ma antibodies ndipo amalimbana ndi matenda.

Kotero, ngati pali kusintha kapena kusintha kwa majini a BTK, maselo a B sangapangidwe bwino. Kenako, chomwe chimachitika ndi chakuti munthu amene alibe kusintha kwa majini sangathe kulimbana ndi matenda monga momwe amachitira. Ndicho chifukwa chake amadwala nthawi zonse, ndipo nthawi zina amatha kukhala ndi matenda akuluakulu omwe angakhale oopsa kwa moyo.

Kodi 'X-linked' ndi chiyani?

Tsopano tiyeni tiwone tanthauzo la 'X-linked'. Tonsefe timapeza majini athu kuchokera kwa makolo onse awiri. Majini awa amapezeka pa zinthu zotchedwa ma chromosome . Majini awa amauza matupi athu momwe angapangire mapuloteni omwe amafunikira kuti agwire ntchito. Nthawi zambiri, ngakhale patakhala kusintha kwa jini imodzi, mtundu wina (wochokera kwa kholo lina) umakhalabe wosasinthika, kotero thupi limatha kugwira ntchito momwe liyenera kukhalira.

Komabe, ma chromosome a amuna ogonana si ofanana. Ali ndi chromosome imodzi ya X ndi chromosome imodzi ya Y. Chifukwa chake, ngati pali kusintha kwa majini pa chromosome iyi ya X, palibe kopi ina yoti igwirizane ndi izi. Jini ya BTK yomwe tidakambirana ili pa chromosome iyi ya X. Ndicho chifukwa chake imatchedwa 'X-linked'. Chifukwa chake ngati mnyamata ali ndi kusintha kwa majini a BTK pa chromosome yake ya X, adzayamba kukhala ndi XLA (X-Linked Agammaglobulinemia).

Atsikana ali ndi ma chromosome awiri a X. Ngakhale ali ndi kusintha komwe kumayambitsa XLA (X-Linked Agammaglobulinemia) pa imodzi mwa ma chromosome awo a X, jini ya BTK pa chromosome inayo ya X ikugwirabe ntchito bwino, kotero amatha kupanga chiwerengero chofunikira cha maselo a B. Chifukwa chake satenga matendawa, koma amatha kukhala onyamula . Izi zikutanthauza kuti amatha kunyamula jini popanda kusonyeza zizindikiro.

Kodi ndi zinthu ziti zomwe zimayambitsa XLA (X-Linked Agammaglobulinemia)?

Pakadali pano, chinthu chokhacho chodziwika bwino chomwe chimayambitsa matenda a XLA (X-Linked Agammaglobulinemia) ndi mbiri ya banja la matendawa . Izi zikutanthauza kuti ndi cholowa.

Kodi atsikana angadwale XLA (X-Linked Agammaglobulinemia)?

Inde, nthawi zambiri , mwana wamkazi amathanso kukhala ndi XLA (X-Linked Agammaglobulinemia). Koma kuti zimenezi zitheke, makolo onse awiri ayenera kukhala ndi chromosome ya X yokhala ndi jini ya BTK yosinthika. Izi zikutanthauza kuti, mayi ndiye wonyamula ndipo bambo nayenso ali ndi XLA (X-Linked Agammaglobulinemia). Nthawi zambiri, ana aakazi amatha kukhala onyamula kusintha kwa majini kumeneku. Kenako, ngakhale atakhala kuti alibe matendawa, amatha kupatsira jini iyi kwa ana awo. Ngati ana amenewo ndi anyamata, mwina akhoza kukhala ndi XLA (X-Linked Agammaglobulinemia).

Kodi ndi mavuto ati omwe angayambitse XLA (X-Linked Agammaglobulinemia)?

Zina mwa zovuta zomwe zingachitike ndi XLA (X-Linked Agammaglobulinemia) ndi izi:

• Matenda a m'mapapo osatha : Matenda opatsirana m'mapapo nthawi zambiri amatha kuwononga mapapo pakapita nthawi.
• Matenda akufalikira ku ziwalo zina za thupi : Mwachitsanzo, matenda amatha kufalikira ku magazi (sepsis) kapena ku ubongo (meningitis).
• Palinso kukayikira kuti pakhoza kukhala chiopsezo chowonjezeka cha mitundu ina ya khansa , koma kafukufuku wina akuchitika pa izi.

Kodi XLA (X-Linked Agammaglobulinemia) imapezeka bwanji?

Dokotala akhoza kuchita mayeso angapo a magazi kuti adziwe ngati inu kapena mwana wanu ali ndi XLA (X-Linked Agammaglobulinemia). Ngati mayeso a magazi awa akusonyeza kuti maselo anu a B kapena ma antibodies ndi ochepa, dokotala wanu adzachita mayeso a majini . Izi zimayang'ana kusintha kwa jini ya BTK mu DNA yanu .

Kodi XLA (X-Linked Agammaglobulinemia) imachiritsidwa bwanji?

Mwatsoka, palibe mankhwala a XLA (X-Linked Agammaglobulinemia). Komabe, pali mankhwala omwe angathandize kupewa mavuto aakulu. Akuluakulu ndi awa:

• Chithandizo cha Immunoglobulin Cholowa M'malo (RIgG) : Izi zimaphatikizapo kupereka ma antibodies ochokera kwa opereka athanzi kudzera mu mtsempha (IV). Chithandizochi chimaperekedwa kamodzi pamwezi . Izi zimathandiza kuwongolera kuchuluka kwa ma antibodies m'thupi pamlingo winawake.
• Kuchiza matenda msanga : Inu kapena mwana wanu akangoganiziridwa kuti muli ndi matenda, dokotala wanu adzayamba kuchiza matenda a bakiteriya ndi maantibayotiki . Ndikofunikira kuyamba chithandizo msanga.
• Kupewa katemera wamoyo : Anthu omwe ali ndi XLA (X-Linked Agammaglobulinemia) sayenera kulandira katemera wamoyo . Katemerayu angayambitse matenda oopsa ndipo akhoza kukhala pachiwopsezo. Zitsanzo zake ndi katemera wa MMR (chikuku, mumps, rubella) , katemera wa nkhuku ndi varicella, ndi katemera wa polio wa pakamwa . Chifukwa chake, ndikofunikira kulankhula ndi dokotala wanu za izi ndikudziwitsidwa mokwanira.

Kodi munthu amene ali ndi XLA (X-Linked Agammaglobulinemia) ayenera kuyembekezera chiyani?

Anthu omwe ali ndi XLA (X-Linked Agammaglobulinemia) ayenera kumwa mankhwala kwa moyo wawo wonse . Izi zikuthandizani kuchepetsa chiopsezo chawo chotenga matenda. Ayenera kukhala paubwenzi wapamtima ndi dokotala wawo ndikupeza chithandizo mwamsanga matenda aliwonse akangoyamba. Inu kapena mwana wanu amene ali ndi XLA (X-Linked Agammaglobulinemia) mungaphonye masiku ambiri a kusukulu ndi kuntchito chifukwa cha matenda kuposa anthu onse.

Kodi anthu omwe ali ndi XLA (X-Linked Agammaglobulinemia) amakhala ndi moyo nthawi yayitali bwanji?

Ndi chinthu chabwino kwambiri kuti, ndi chitukuko cha njira zochiritsira , anthu omwe ali ndi XLA (X-Linked Agammaglobulinemia) m'maiko otukuka monga America akukhala moyo mpaka akuluakulu . Komabe, m'maiko osatukuka, zimakhala zovuta kupeza matenda ndi kulandira chithandizo. Chifukwa chake, nthawi zambiri, moyo wa ana omwe ali ndi XLA (X-Linked Agammaglobulinemia) m'maiko otere ukhoza kuchepetsedwa. Koma ku Sri Lanka, tsopano pali mankhwala abwino a matenda otere.

Kodi XLA (X-Linked Agammaglobulinemia) ingapewedwe?

Ngati mukuda nkhawa ndi XLA (X-Linked Agammaglobulinemia), kutanthauza kuti wina m'banja mwanu ali ndi vutoli, mutha kuwonana ndi dokotala ndikumuyesa majini . Izi zingakuthandizeni kudziwa za majini omwe mungapatsire mwana wanu. Ngati ndinu wonyamula kusintha kwa majini komwe kumayambitsa XLA (X-Linked Agammaglobulinemia), mukakhala ndi mwana, pali mwayi wa 50% kuti mwana ameneyo adzalandira kusintha kwa majini. Ngati mwana ameneyo ndi mnyamata, akhoza kukhala ndi XLA (X-Linked Agammaglobulinemia). Ngati muli ndi XLA (X-Linked Agammaglobulinemia), atsikana anu adzakhala ndi matendawa. Mlangizi wa majini kapena dokotala amene adalamula kuti muyesedwe adzakupatsani upangiri wowonjezera pa izi.

Kodi ndimadzisamalira bwanji?

Njira yabwino yodzisamalira ndi XLA (X-Linked Agammaglobulinemia) ndikuyika patsogolo thanzi lanu . Sungani nthawi yokumana ndi dokotala. Phunzirani kuzindikira zizindikiro za matenda. Funsani dokotala wanu zomwe mungachite ngati mukupeza zizindikiro za matenda.

Kodi ndiyenera kupita kwa dokotala liti?

Ndi bwino kulankhula ndi dokotala ngati pali zinthu monga izi:

• Ngati mwana wanu wadwala atalandira katemera wamoyo (monga katemera wa MMR, katemera wa nkhuku).
• Ngati mwana wanu nthawi zambiri amadwala matenda a bakiteriya .
• Ngati mumadwala matenda obwera chifukwa cha mabakiteriya pafupipafupi (chifukwa izi zitha kukhala matenda ngati CVID, omwe amakhudzanso akuluakulu).

Dokotala adzatha kukuuzani ngati izi ziyenera kufufuzidwa kwambiri kapena ayi.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala wanga?

Zingakhale zothandiza kufunsa mafunso ngati awa mukapita kwa dokotala wanu:

• Ndi zizindikiro ziti za matenda zomwe ndiyenera kuyang'anitsitsa?
• Ndiyenera kuchita chiyani ngati ndikuganiza kuti ine kapena mwana wanga ali ndi matenda?
• Kodi njira zochiritsira ndi ziti?
• Kodi ine kapena mwana wanga timafunika chithandizo kangati?

Ndizachilendo kuti ana aang'ono azidwala pafupipafupi. Koma ngati mwana wanu akudwala matenda obwera chifukwa cha mabakiteriya pafupipafupi, pakhoza kukhala china chake chomwe chikuyambitsa vutoli. Lankhulani ndi dokotala wanu za nkhawa zilizonse zomwe muli nazo. Kupeza matenda ndi chithandizo msanga ndiyo njira yabwino kwambiri yopezera zotsatira zabwino kwambiri.

Ngati mukukhala ndi XLA (X-Linked Agammaglobulinemia) - vuto la majini lomwe thupi lanu silipanga maselo a B moyenera - tsatirani malangizo a dokotala wanu molondola. Ndikofunikira kwambiri kuzindikira zizindikiro za matenda kuti mupeze chithandizo mwachangu.

Zinthu zofunika kwambiri kukumbukira m'nkhaniyi

Chabwino, nazi zinthu zingapo zomwe muyenera kukumbukira kuchokera ku zomwe takambirana zokhudza XLA (X-Linked Agammaglobulinemia):

• Kodi XLA (X-Linked Agammaglobulinemia) ndi chiyani?Matenda osowa kwambiri a majini omwe amakhudza kwambiri anyamata .
• Izi zimachitika pamene maselo a B m'thupi sakukula bwino , zomwe zimapangitsa kuti ma antibodies achepe komanso matenda opatsirana pafupipafupi a mabakiteriya .
• Zinthu monga ma tonsils ndi adenoids zimatha kuchepa kapena kutha.
• Ngakhale kuti palibe mankhwala enieni a izi, zitha kulamulidwa bwino ndi chithandizo cha moyo wonse (RIgG) komanso chithandizo cha maantibayotiki mwachangu.
• Si bwino kupereka katemera wamoyo kwa anthu awa.
• Ngati mwana wanu wamwamuna nthawi zambiri amadwala kwambiri, ndikofunikira kwambiri kufunafuna upangiri wa dokotala nthawi yomweyo. Kuzindikira matendawa msanga ndi kulandira chithandizo kungathandize kwambiri mwana wanu kukhala ndi moyo wabwinobwino.

Ndikukhulupirira kuti izi zikuthandizani. Ngati muli ndi mafunso aliwonse, musazengereze kulankhula ndi dokotala wa banja lanu!

` X-linked agammaglobulinemia, XLA, B-cells, chitetezo chamthupi, matenda a majini, matenda obwerezabwereza, anyamata, ma antibodies, jini ya BTK, chithandizo cha RIgG