Kodi mwana wanu amadwala nthawi zonse? Zingakhale SCID (Severe Combined Immunodeficiency)! Tiyeni tikambirane za izi!

Kodi mwana wanu amadwala nthawi zonse? Kodi matenda ena amachira msanga kuposa ena? Nthawi zina izi zimakhala zachilendo, koma zimathanso kuchitika chifukwa cha matenda osowa kwambiri koma oopsa kwambiri. Ndicho chimene SCID (Severe Combined Immunodeficiency) ili. Tiyeni tikambirane za izi mwatsatanetsatane lero, sichoncho? Musadandaule, ndikofunikira kwambiri kudziwa izi.

Kodi vuto la SCID (Severe Combined Immunodeficiency) ndi chiyani? Tiyeni timvetse mosavuta.

Mwachidule, SCID ndi matenda osowa kwambiri komanso osowa kwambiri omwe amakhudza anthu ochepa kwambiri. Amapangitsa kuti chitetezo cha mthupi lathu, chomwe chimalimbana ndi matenda, chisamagwire bwino ntchito. Chingakhale vuto lalikulu kwambiri.

Timatcha izi kuti 'kusowa chitetezo chamthupi koyambirira'. Mabuku ena amatchanso kuti 'cholakwika chobadwa nacho cha chitetezo chamthupi'. Izi zikutanthauza kuti, ndi chinthu chomwe chimapezeka kuyambira tsiku lobadwa ndipo chingapatsidwe mibadwomibadwo. Kusintha kosiyanasiyana kwa majini kungayambitse vutoli la SCID.

Tangoganizirani, ngakhale m'dziko ngati America, ngati ana pafupifupi 58,000 amabadwa chaka chilichonse, mmodzi yekha ndiye amene adzadwala matendawa otchedwa SCID (Severe Combined Immunodeficiency). Mutha kuganiza momwe zimenezi zimachitikira kawirikawiri.

Kodi chimachitika n’chiyani mwana amene ali ndi SCID?

Kuti timvetse izi, choyamba tiyenera kuona momwe chitetezo cha mthupi lathu, gulu lankhondo lomwe limalimbana ndi matenda, chimagwirira ntchito.

Tangoganizirani, mwana akakhala m'mimba mwa mayi ake, gulu lankhondo la maselo olimbana ndi matenda limayamba kupangidwa m'thupi mwake. Likulu la gululi ndi mafupa . Pali maselo apadera kumeneko, omwe timawatcha ' maselo oyambira ' . Maselo oyambira awa amatha kupanga mitundu yonse itatu yayikulu ya maselo amagazi:

• Maselo ofiira a m'magazi: Awa ndi omwe amanyamula mpweya m'thupi lonse.
• Maselo oyera a m'magazi : Awa ndi asilikali omwe ali m'thupi lathu omwe amatiteteza ku matenda.
• Ma platelets : Izi zimathandiza kuti magazi aziundana.

Tsopano, pakati pa maselo oyera a m'magazi amenewa, pali gulu lapadera lotchedwa 'lymphocytes' . Awa ndi omwe amalimbana ndi matenda mwachindunji. Pali mitundu iwiri ikuluikulu ya ma lymphocytes awa: T-cells ndi B-cells. Maselo onsewa ndi ofunikira kwambiri polimbana ndi matenda.

• Maselo a T amazindikira 'olowa' omwe amayambitsa matenda - zinthu monga mabakiteriya ndi mavairasi - omwe amalowa m'thupi, kuwaukira, ndikuwawononga.
• Maselo a B amapanga 'ma antibodies' . Ma antibodies amenewa ali ngati zokumbukira. Mukadwala, mumakumbukira ndipo mumakhala okonzeka kulimbana nawo ngati abwereranso.

Mawu akuti 'Combined' m'dzina lakuti SCID (Severe Combined Immunodeficiency) amatanthauza kuti matendawa amakhudza maselo a T ndi maselo a B. Ichi ndichifukwa chake amatchedwa 'combined' kusowa kwa maselo.

Mwana amene ali ndi SCID amakhala ndi ma lymphocyte ochepa kwambiri, kapena maselo omwe ali nawo sagwira ntchito bwino. Chifukwa chake, chifukwa chitetezo cha mthupi sichigwira ntchito bwino, zimakhala zovuta kwambiri, nthawi zina sizingatheke, kulimbana ndi majeremusi—mavairasi, mabakiteriya, ndi bowa.

Kodi chimayambitsa SCID ndi chiyani?

Palinso mitundu yosiyanasiyana ya SCID (Severe Combined Immunodeficiency).

Mtundu wofala kwambiri umayamba chifukwa cha vuto la jini pa chromosome ya X. Izi nthawi zambiri zimakhudza anyamata okha. Chifukwa atsikana ali ndi ma chromosome awiri a X, ngakhale mmodzi ali ndi vuto, chitetezo chawo cha mthupi chimatha kugwira ntchito chifukwa cha chromosome ina yathanzi ya X. Koma anyamata ali ndi chromosome imodzi yokha ya X. Chifukwa chake ngati jini imeneyo ndi yofooka, matendawa adzakula. Atsikana akhoza kukhala 'onyamula' matendawa. Izi zikutanthauza kuti ngakhale atakhala kuti alibe matendawa, ana awo amatha kupatsira jini.

Palinso mtundu wina wa SCID, womwe umayamba chifukwa cha kusowa kwa enzyme yomwe imafunika kuti ma lymphocyte apangidwe. Kupatula izi, SCID ikhozanso kuchitika chifukwa cha zifukwa zina zosiyanasiyana za majini.

Kodi zizindikiro za SCID ndi ziti? Kodi zimazindikirika bwanji?

Ngakhale makanda omwe ali ndi SCID angawoneke athanzi pobadwa , mavuto angayambe kukula pakapita nthawi. Nazi zizindikiro zina zomwe muyenera kusamala nazo:

• Kulephera kukula bwino, kusanenepa nthawi zonse .
• Kutsegula m'mimba kosatha .
• Matenda opatsirana pafupipafupi, nthawi zina oopsa, opuma . Izi zikutanthauza kutsekeka kwa chifuwa kosalekeza komanso kukhosomola.
• Matenda a bowa omwe amayambitsa mawanga oyera mkamwa ndi pakhosi (thrush)Kubwera. Timatchanso kuti 'Ullogam'.
• Kuphatikiza apo, matenda ena a bakiteriya, mavairasi, kapena bowa omwe ndi ovuta kuchiza komanso omwe angakhale oopsa nthawi zambiri amatha kuchitika. Mwachitsanzo:
• Matenda a m'makutu (acute otitis media)
• Matenda a sinus (sinusitis)
• Ziphuphu pakhungu
• Matenda a ubongo, meningitis
• Chibayo

Tangoganizirani momwe zimakhalira zovuta kwa makolo ngati mwana wamng'ono akudwala motere, ndipo ngati matenda ena ayamba kuchira asanabwere ena. Chifukwa chake, ngati chimodzi mwa zizindikirozi chikupitirira, muyenera kuwona dokotala mwachangu momwe mungathere.

Kodi matenda a SCID (Severe Combined Immunodeficiency) amapezedwa bwanji?

Mwamwayi, kuyezetsa magazi kosavuta, kotchedwa 'kupima makanda obadwa kumene' , kumachitika tsopano kuti aone matenda ena mwa makanda akangobadwa kumene. Mwachitsanzo, 'sickle cell disease' ndi 'cystic fibrosis' zitha kuzindikirika kudzera mu izi. Mayeso ofanana akuchitidwanso ku Sri Lanka. Nkhani yabwino ndi yakuti SCID (Severe Combined Immunodeficiency) tsopano ingathe kuzindikirikanso kudzera mu kuyezetsa makanda obadwa kumene kumeneku m'maiko ena.

Mwanjira imeneyi , matendawa akapezeka msanga, chithandizo chimayamba mwachangu. Kenako zotsatira zake zimakhala zabwino kwambiri.

Ngati kuyezetsa mwana wakhanda kukuwonetsa kuti ali ndi SCID, nthawi zambiri mwanayo amatumizidwa kwa katswiri wa matenda ofooka m'thupi. Dokotala ameneyo adzalamula kuti apitirize kuyezetsa magazi, ndipo mwina kuyezetsa majini .

Ngati wina m'banjamo ali ndi SCID, kapena ngati pali mbiri ya banja lomwe lili ndi chitetezo chamthupi chofooka, makolo angalandire upangiri wa majini . Angalandirenso mayeso a magazi mwana akangobadwa . Matenda akapezeka msanga, chithandizo chimayamba msanga ndipo zotsatira zake zimakhala zabwino.

Nthawi zina, ngati kusintha kwa majini komwe kumayambitsa SCID m'banja kukudziwika, n'zotheka kuyesa mwanayo matendawa akangobadwa . Komabe, kwa makanda omwe alibe mbiri ya banja kapena omwe sanayesedwe kudzera mu kuyezetsa makanda, matendawa amatha kuchedwa mpaka miyezi 6 asanadziwike. Pofika nthawi imeneyo, matendawa amakhala atachedwa kwambiri.

Kodi mankhwala a SCID ndi ati?

SCID ndi vuto ladzidzidzi la ana. Izi zikutanthauza kuti ngati sanalandire chithandizo mwachangu, ana awa amatha kufa asanafike tsiku lawo loyamba lobadwa. Chifukwa chake, chithandizo chachangu n'chofunika kwambiri.

Chithandizo chofala kwambiri ndi 'kuika maselo oyambira'.Zimatchedwanso 'kuika mafupa', izi zimaphatikizapo kupereka maselo oyambira kuchokera kwa munthu wathanzi kupita kwa mwana wodwala. Chiyembekezo ndi chakuti maselo atsopanowa adzamanganso chitetezo cha mthupi cha mwana.

• Kusamutsa maselo oyambira bwino kwambiri kungachitike ngati maselowo atengedwa kuchokera kwa m'bale wawo wofanana ndi majini.
• Nthawi zina, maselo a makolo nawonso angakhale ogwirizana.
• Ngati palibe aliyense m'banjamo amene angagwirizane, madokotala angagwiritsenso ntchito maselo oyambira ochokera kwa wopereka wina wosagwirizana.

Ana ena omwe ali ndi SCID angafunikenso mankhwala a chemotherapy asanaikidwenso.

Chofunika kwambiri ndichakuti kuyika maselo oyambira kumachitika mkati mwa miyezi ingapo yoyambirira ya moyo wa mwana, asanayambe kutenga matenda aliwonse. Pamenepo ndiye zotsatira zake zimakhala zabwino kwambiri.

Chithandizo cha majini chawonetsanso zotsatira zabwino m'mayesero azachipatala a mitundu ingapo ya SCID. Komabe, sichikugwiritsidwa ntchito kwambiri m'maiko ambiri padziko lonse lapansi. Kafukufuku wokhudza chithandizo cha majini cha SCID akupitirirabe.

Pochiza mwana ndi SCID, nthawi zambiri pamakhala gulu lachipatala lopangidwa ndi akatswiri angapo. Mwachitsanzo:

• Katswiri wa chitetezo cha mthupi la ana
• Dokotala wopatsirana mafupa
• Katswiri wa matenda opatsirana a ana

Makanda omwe ali ndi SCID ali pachiwopsezo chachikulu chotenga matenda omwe angawononge moyo wawo. Chifukwa chake, madokotala amayamba kuwapatsa mankhwala othandiza kupewa matenda. Mwachitsanzo, maantibayotiki, mavairasi, ma fungicides , ndi jakisoni wa antibody/immunoglobulin . Ana ena, kutengera kusiyanasiyana kwa majini awo, angafunikenso kulowetsedwa ma enzyme .

Zinthu zambiri zoti mudziwe zokhudza SCID

Kuwonjezera pa mankhwala ndi chithandizo, palinso njira zina zodzitetezera zomwe muyenera kutsatira kuti mupewe matenda. Kumbukirani izi mukamasamalira mwana yemwe ali ndi SCID:

• Kuti apewe kufalikira kwa matendawa, ayenera kukhala payekha kwa ena. Izi zikutanthauza kumupatsa chipinda china ndikuonetsetsa kuti zinthu zomwe akukhudza ndi zoyera.
• Sikoyenera kupereka katemera wamoyo. Izi zili choncho chifukwa zingakhale zoopsa kupereka mwana yemwe ali ndi SCID, ngakhale kachilombo kofooka, ngati katemera. Zitsanzo za izi ndi izi:Katemera wa Rotavirus, katemera wa chickenpox/varicella, katemera wa chikuku-mumps-rubella (MMR), katemera wa polio wakamwa, katemera wa BCG, ndi katemera wa chimfine chamoyo.
• Chofunika kwambiri ndichakuti palibe amene amakhala m'banja limodzi ndi mwana amene ayenera kulandira katemera wamoyoyu, chifukwa amatha kupatsira matendawa kwa mwana.
• Ngati pakufunika kuikidwa magazi, magaziwo ayenera kuperekedwa mwapadera. Izi zimachitika kuti tipewe mavuto omwe angabwere chifukwa choikidwa magazi.
• Mungafunike kusiya kuyamwitsa kwa kanthawi mpaka mkaka wanu utayesedwa mavairasi omwe angayambitse matenda. Tsatirani malangizo a dokotala wanu mosamala.

Kodi inu monga makolo mungathandize bwanji?

Pamene mwana wanu akuyesedwa SCID, komanso panthawi ya chithandizo, pali zinthu zambiri zomwe inu monga kholo mungachite kuti muchepetse chiopsezo cha matenda. Nazi zina mwa izo:

• Chepetsani chiwerengero cha alendo obwera kunyumba. Ndi bwino kukhala ndi anthu ochepa momwe mungathere kudzaona mwanayo.
• Pewani kupita ndi mwana wanu kumalo odzaza anthu ambiri , monga m'masitolo akuluakulu ndi m'maphwando.
• Musabweretse mwana wanu pafupi ndi munthu aliyense amene ali ndi chimfine , malungo, kapena chifuwa. Ngati pali munthu wotereyu panyumba, musungeni kutali ndi mwana wanu.
• Musanakhudze mwana, onetsetsani kuti aliyense amene akusamalira mwana wasamba m'manja mwake bwino. Sambani m'manja mwanu ndi sopo ndi madzi othamanga kwa masekondi osachepera 20.

Tiyeni tiganizire za tsogolo.

Mwana amene ali ndi SCID angafunike kuchitidwa opaleshoni zambiri zachipatala komanso kukhala kuchipatala pafupipafupi. Izi zitha kukhala zovuta kwambiri kwa banja lililonse. Koma kumbukirani kuti simuli nokha.

Gulu lachipatala lilipo kuti likuthandizeni inu ndi mwana wanu musanayambe chithandizo, panthawi yake, komanso mutalandira chithandizo. Muthanso kupeza thandizo ndi chilimbikitso kuchokera ku magulu othandizira, ogwira ntchito zachitukuko, abale, ndi abwenzi. Pakhoza kukhala mabungwe ku Sri Lanka omwe amathandiza ana omwe ali ndi vutoli, choncho ayang'aneni.

Kuti mudziwe zambiri ndi chithandizo pa intaneti, mutha kupita ku mawebusayiti apadziko lonse lapansi ngati awa (awa ali mu Chingerezi):

• Maziko Othandizira Kusowa kwa Chitetezo cha Mthupi
• SCID, Angelo a Moyo Wonse

Zinthu zofunika kwambiri zomwe mungapite nazo kunyumba kuchokera m'nkhaniyi

Chabwino, kuchokera pa zomwe takambirana, izi ndi zinthu zofunika kwambiri zomwe muyenera kukumbukira:

• SCID (Severe Combined Immunodeficiency) ndi matenda osowa kwambiri koma oopsa omwe amabadwa nawo omwe amachititsa kuti chitetezo cha mthupi cha mwana chisagwire bwino ntchito.
• Ngati muli ndi zizindikiro monga matenda oopsa pafupipafupi, kulephera kunenepa, kapena kutsegula m'mimba kosalekeza , funsani upangiri wa dokotala nthawi yomweyo.
• Kuyezetsa makanda nthawi zina kumatha kuzindikira SCID msanga.
• Kuzindikira msanga ndi kulandira chithandizo n'kofunika kwambiri. Chithandizo chachikulu ndi kuyika maselo oyambira/kuika mafuta a m'mafupa.
• Ndikofunikira kwambiri kuteteza mwana yemwe ali ndi SCID ku matenda, ndipo njira zapadera zodzitetezera ziyenera kutengedwa.
• Simuli nokha. Pezani thandizo kwa madokotala, mabanja, ndi magulu othandizira.

Ndikukhulupirira kuti izi zikuthandizani. Ndikufunira mwana wanu kuti achire mwachangu!

` SCID, Kusowa kwa Chitetezo Chokwanira, Kusowa kwa Chitetezo Chokwanira, Ana, Matenda a Majini, Kusamutsa Mafuta a M'mafupa, Kuwunika Makanda Obadwa Mwatsopano