Ese umwana wawe ahora arwaye? Bishobora kuba ari indwara ya SCID (Severe Combined Immunodeficiency)! Reka tubiganireho!

Ese umwana wawe ahora arwaye? Ese indwara imwe irakira mbere y'indi? Hari igihe ibi biba ari ibisanzwe, ariko bishobora no guterwa n'indwara idakunze kugaragara ariko ikomeye cyane. Ni cyo SCID (Severe Combined Immunodeficiency) ari cyo. Reka tubiganireho mu buryo burambuye uyu munsi, si byo se? Ntugahangayike, ni ngombwa cyane kubimenya.

SCID (Severe Combined Immunodeficiency) ni iki? Reka tubisobanukirwe mu buryo bworoshye.

Muri make, SCID ni indwara idakunze kugaragara cyane, idakunze kugaragara mu buryo bw'uturemangingo, ifata abantu bake cyane. Itera ubudahangarwa bw'umubiri wacu, burwanya indwara, gukora nabi. Ishobora kuba indwara ikomeye cyane.

Ibi tubyita 'ikibazo cy'ibanze cy'ubudahangarwa bw'umubiri '. Hari ibitabo bimwe na bimwe bibyita 'ikosa ry'ubudahangarwa bw'umubiri'. Ni ukuvuga ko ari ikintu kibaho kuva umunsi w'amavuko kandi gishobora guhererekanywa mu bisekuruza bitandukanye. Impinduka zitandukanye mu ngirabuzimafatizo zishobora gutera iyi ndwara ya SCID.

Tekereza gato, ndetse no mu gihugu nka Amerika, iyo abana bagera ku 58.000 bavutse buri mwaka, umwe muri bo ni we uzarwara iyi ndwara yitwa SCID (Severe Combined Immunodeficiency). Ushobora kwiyumvisha ukuntu ibyo ari gake cyane.

Ni iki kiba mu nda y'umwana urwaye SCID?

Kugira ngo tubisobanukirwe, tugomba kubanza kureba uburyo ubudahangarwa bw'umubiri wacu, ingabo zirwanya indwara, bikora.

Tekereza, iyo umwana ari mu nda ya nyina, umutwe w'ingirabuzimafatizo zirwanya indwara utangira kwirema mu mubiri we. Icyicaro gikuru cy'iyi ngabo ni umwongo w'amagufwa . Hariho ingirabuzimafatizo zidasanzwe, twita ' uturemangingo ' . Utu turemangingo dushobora gukora ubwoko butatu bw'ingenzi bw'ingirabuzimafatizo z'amaraso:

• Uturemangingo dutukura tw'amaraso: Utwo ni two dutwara umwuka wa ogisijeni mu mubiri wose.
• Uturemangingo tw'amaraso bwera : Aba ni abasirikare mu mubiri wacu baturinda indwara.
• Platelets : Izi zifasha kuvura amaraso.

Ubu, muri izi selile z'amaraso zera, hari itsinda ryihariye ryitwa 'lymphocytes' . Izi ni zo zirwanya indwara mu buryo butaziguye. Hari ubwoko bubiri bw'ingenzi bw'izi selile: T-cells na B-cells. Izi selile zombi ni ingenzi cyane mu kurwanya indwara.

• Uturemangingo twa T tumenya 'abatera indwara' - ibintu nka bagiteri na virusi - byinjira mu mubiri, bikabitera, bikabisenya.
• Selile B zikora 'antibodies' . Izi antibodies ni nk'urwibutso. Iyo urwaye, urabyibuka kandi ukaba witeguye kubirwanya nibigaruka.

Ijambo 'Combined' mu izina rya SCID (Severe Combined Immunodeficiency) bivuze ko iyi ndwara yibasira uturemangingo twa T na B. Niyo mpamvu yitwa 'combined'.

Umwana urwaye SCID aba afite uturemangingo duke cyane muri utwo tunyangingo, cyangwa uturemangingo afite ntidukora neza. Rero, kubera ko ubudahangarwa bw'umubiri budakora neza, biragoye cyane, rimwe na rimwe ntibishoboka, kurwanya mikorobe—virusi, bagiteri, n'ibihumyo.

Ni iki gitera SCID?

Hariho kandi ubwoko butandukanye bwa SCID (Severe Combined Immunodeficiency).

Ubwoko bukunze kugaragara cyane buterwa n'ikibazo cya gene kuri chromosome X. Ibi akenshi biba ku bahungu gusa. Kubera ko abakobwa bafite chromosomes X ebyiri, nubwo imwe yaba ifite ikibazo, ubudahangarwa bwabo bw'umubiri bushobora gukora kubera chromosome X yindi nzima. Ariko abahungu bafite chromosome X imwe gusa. Rero iyo gene idakomeye, indwara izavuka. Abakobwa bashobora kuba 'abatwara' iyo ndwara gusa. Ibi bivuze ko nubwo badafite iyo ndwara, abana babo bashobora kuyitera.

Hari ubundi bwoko bwa SCID, buterwa no kubura kwa enzyme ikenewe kugira ngo lymphocytes zikore neza. Uretse ibi, SCID ishobora no guterwa n'izindi mpamvu zitandukanye zishingiye ku ngirabuzimafatizo.

Ni ibihe bimenyetso bya SCID? Ipimwa gute?

Nubwo abana barwaye SCID bashobora kugaragara nk'abazima igihe bavuka , ibibazo bishobora gutangira kugaragara uko igihe kigenda gihita. Dore bimwe mu bimenyetso ugomba kwitondera:

• Kunanirwa gukura neza, kutagira ibiro byinshi buri gihe .
• Impiswi idakira .
• Indwara z'ubuhumekero zikunze kugaragara, rimwe na rimwe zikaba zikomeye . Ibi bivuze ko umuntu ahora afite ibicurane mu gituza no gukorora.
• Indwara y'ibihumyo itera uduce tw'umweru mu kanwa no mu muhogo (thrush yo mu kanwa)Kuza. Ibi kandi tubita 'Ullogam'.
• Byongeye kandi, izindi ndwara zandurira mu mikorobe, virusi, cyangwa fungal zigoye kuvura kandi zishobora kuba zikomeye zishobora kubaho. Urugero:
• Indwara zo mu matwi (indwara zo mu matwi zifata mu buryo butunguranye)
• Ubwandu bwa sinus (sinusitis)
• Uduheri ku ruhu
• Umuriro wo mu bwonko, meningite
• Umusonga

Tekereza ukuntu bigora ababyeyi iyo umwana muto akomeje kurwara gutya, kandi indwara imwe ikagenda ikira mbere y’uko indi igaragara. Kubwibyo, niba kimwe muri ibi bimenyetso kigikomeje, ugomba kujya kwa muganga vuba bishoboka.

Ni gute indwara ya SCID (Severe Combined Immunodeficiency) ipimwa?

Ku bw'amahirwe, ikizamini cyoroshye cy'amaraso, cyitwa 'isuzuma ry'impinja zivutse' , ubu kirakorwa kugira ngo harebwe indwara zimwe na zimwe mu bana bakimara kuvuka . Urugero, 'indwara y'uturemangingo tw'umusonga' na 'cystic fibrosis' bishobora kumenyekana binyuze muri ibi. Ibizamini nk'ibyo birimo gukorwa muri Sri Lanka. Inkuru nziza ni uko SCID (Severe Combined Immunodeficiency) ubu ishobora no kumenyekana binyuze muri iri suzuma ry'impinja mu bihugu bimwe na bimwe.

Muri ubu buryo , iyo indwara igaragaye hakiri kare, ubuvuzi bushobora gutangira vuba. Hanyuma ibisubizo biba byiza cyane.

Iyo isuzuma ry'uruhinja rigaragaje ko umwana yanduye indwara ya SCID, umwana akunze koherezwa kwa muganga w'inzobere mu bijyanye n'ubudahangarwa bw'umubiri. Uwo muganga azategeka ko hakorwa ibindi bipimo by'amaraso, ndetse wenda no gupimwa imiterere y'umubiri .

Iyo hari umuntu mu muryango ufite ubumuga bwa SCID, cyangwa niba hari amateka y'ubudahangarwa bw'umubiri mu muryango, ababyeyi bashobora kubona inama ku bijyanye n'uturemangingo . Bashobora kandi gupimwa amaraso umwana akivuka . Uko isuzuma rikorwa vuba, niko ubuvuzi butangira vuba kandi umusaruro ukarushaho kuba mwiza.

Hari igihe iyo hamenyekanye ihinduka ry’uturemangingo (gene mutation) ritera SCID mu muryango, birashoboka gupima umwana indwara akivuka . Ariko, ku bana badafite amateka y’umuryango cyangwa batapimwe binyuze mu gupima abana bavutse, bishobora gutinda kugeza ku mezi 6 mbere yuko indwara igaragara. Icyo gihe, biba byatinze cyane.

Ni ubuhe buryo bwo kuvura SCID?

SCID ni ikibazo cyihutirwa cy’ubuvuzi ku bana. Ibi bivuze ko iyo kidavuwe vuba, aba bana bashobora gupfa mbere y’uko bageza ku isabukuru yabo ya mbere. Kubwibyo, kuvurwa vuba ni ingenzi cyane.

Uburyo bukunze kugaragara ni ugutera uturemangingo tw’umubiri.Bizwi kandi ko ari 'gutera uturemangingo tw'amagufwa', ibi bikubiyemo guha uturemangingo tw'umubiri kuva ku muntu muzima kugeza ku mwana urwaye. Icyizere ni uko utwo turemangingo dushya tuzongera kubaka ubudahangarwa bw'umubiri bw'umwana.

• Gutera uturemangingo tw’ingirabuzimafatizo byagenze neza cyane bishobora gukorwa iyo uturemangingo twakuwe mu muryango w’umuntu uhuje imiterere y’uturemangingo.
• Hari igihe uturemangingo tw'ababyeyi natwo dushobora kuba duhuye.
• Iyo nta muntu n'umwe mu muryango uhuye, abaganga bashobora no gukoresha uturemangingo tw’umubiri dukomoka ku muntu udafite aho duhuriye.

Bamwe mu bana barwaye SCID bashobora no gukenera imiti igabanya ubukana mbere yo guterwa inshinge.

Igikuru ni uko guterwa uturemangingo tw’inyuma bikorwa mu mezi make ya mbere y’ubuzima bw’umwana, mbere yuko arwara indwara iyo ari yo yose. Icyo gihe ni bwo ibisubizo biba byiza cyane.

Ubuvuzi bw’uturemangingo bwagaragaje kandi umusaruro mwiza mu igeragezwa rya muganga ku bwoko butandukanye bwa SCID. Ariko, ntabwo bukoreshwa cyane mu bihugu byinshi ku isi. Ubushakashatsi ku buvuzi bw’uturemangingo bwa SCID buracyakomeje.

Mu gihe cyo kuvura umwana urwaye SCID, akenshi haba hari itsinda ry’abaganga rigizwe n’inzobere nyinshi. Urugero:

• Inzobere mu by'ubudahangarwa bw'abana
• Umuganga wo gutera umwongo w'amagufwa
• Impuguke mu ndwara zandura ku bana

Abana barwaye SCID baba bafite ibyago byinshi byo kwandura indwara zishobora gushyira ubuzima bwabo mu kaga. Kubwibyo, abaganga batangira imiti ibafasha kwirinda indwara. Urugero, imiti igabanya ubukana bw'indwara ziterwa na antibiyotike, imiti igabanya ubukana bw'indwara ziterwa na virusi, imiti irwanya imyuka, n'inshinge za antibody/immunoglobulin . Bamwe mu bana, bitewe n'impinduka mu miterere yabo, bashobora no gukenera guterwa enzymes .

Ibindi bintu byo kumenya kuri SCID

Uretse imiti n'imiti, hari n'izindi ngamba ugomba gufata kugira ngo wirinde kwandura. Ibi bintu ujye ubyibuka mu gihe wita ku mwana urwaye SCID:

• Kugira ngo wirinde ikwirakwira ry'ubwandu, agomba kwitandukanya n'abandi. Ibi bivuze kumuha icyumba cyihariye no kugenzura neza ko ibintu akoraho bisukuye.
• Ntabwo ari byiza gutanga urukingo ruzima. Ibi biterwa nuko bishobora kuba bibi guha umwana urwaye SCID, ndetse na virusi yacitse intege nke, nk'urukingo. Ingero z'ibi ni izi:Urukingo rwa Rotavirus, urukingo rwa polio/varicella, urukingo rwa measles-mumps-rubella (MMR), urukingo rwa polio yo mu kanwa, urukingo rwa BCG, n'inkingo nzima z'ibicurane.
• Igikuru ni uko nta muntu ubana mu rugo rumwe n'umwana ugomba guhabwa izi nkingo nzima, kuko zishobora kwanduza umwana indwara.
• Niba bikenewe guterwa amaraso, agomba kuvurwa by’umwihariko. Ibi bikorwa kugira ngo hirindwe ingorane zishobora guterwa no guterwa amaraso.
• Ushobora gukenera guhagarika konsa igihe runaka kugeza igihe amashereka yawe azapimirwa virusi zishobora gutera indwara. Kurikiza amabwiriza ya muganga witonze.

Ni gute mwebwe nk'ababyeyi mwafasha?

Mu gihe umwana wawe arimo gupimwa SCID, no mu gihe cyo kuvurwa, hari byinshi ushobora gukora nk'umubyeyi kugira ngo ugabanye ibyago byo kwandura. Dore bimwe muri byo:

• Gabanya umubare w'abashyitsi baza mu rugo. Ni byiza kugira abantu bake bashoboka baza kureba umwana.
• Irinde kujyana umwana wawe ahantu hahurira abantu benshi , nko mu maduka manini no mu minsi mikuru.
• Ntukazane umwana wawe hafi y'umuntu wese ufite ibicurane , umuriro cyangwa inkorora. Niba hari umuntu nk'uwo mu rugo, mushyire kure y'umwana wawe.
• Mbere yo gukora ku mwana, banza umenye neza ko buri wese ugiye kwita ku mwana yakaraba intoki ze neza. Karaba intoki zawe n'isabune n'amazi atemba byibuze amasegonda 20.

Reka dutekereze ku hazaza.

Umwana urwaye SCID ashobora kuba agomba kuvurwa kenshi no kujya mu bitaro kenshi. Ibi bishobora kuba ibintu bihangayikisha umuryango uwo ari wo wose. Ariko ibuka ko utari wenyine.

Itsinda ry’abaganga ririho kugira ngo rigufashe wowe n’umwana wawe mbere, mu gihe cyo kuvurwa, na nyuma yo kuvurwa. Ushobora kandi kubona ubufasha n’inkunga bivuye mu matsinda y’abaterankunga, abakozi bashinzwe imibereho myiza y’abaturage, umuryango, n’inshuti. Muri Sri Lanka hashobora kuba hari imiryango ifasha abana bafite iyi ndwara, bityo rero barebe.

Kugira ngo ubone amakuru arambuye n'ubufasha kuri interineti, ushobora gusura imbuga mpuzamahanga nk'izi (izi ziri mu Cyongereza):

• Ikigo gishinzwe kurwanya ubukene bw'ubudahangarwa bw'umubiri
• SCID, Abamarayika b'Ubuzima bwose

Ibintu by'ingenzi ushobora kujyana mu rugo muri iyi nkuru

Noneho rero, ukurikije ibyo twavuze, ibi ni byo bintu by'ingenzi ugomba kwibuka:

• SCID (Severe Combined Immunodeficiency) ni indwara idakunze kugaragara ariko ikomeye itera ubudahangarwa bw'umubiri bw'umwana kudakora neza.
• Niba ufite ibimenyetso nko kwandura indwara zikomeye kenshi, kunanirwa kubyibuha, cyangwa impiswi idashira , shaka ubufasha bwa muganga vuba.
• Gusuzuma abana bavutse rimwe na rimwe bishobora kugaragaza SCID hakiri kare.
• Gusuzuma no kuvura hakiri kare ni ingenzi cyane. Uburyo bw'ingenzi bwo kuvura ni ugutera uturemangingo tw'ingirabuzimafatizo/gutera umwongo w'amagufwa.
• Ni ingenzi cyane kurinda umwana urwaye SCID kwandura indwara, kandi hagomba gufatwa ingamba zidasanzwe zo kwirinda.
• Nturi wenyine. Shaka ubufasha ku baganga, ku miryango no ku matsinda y'abaterankunga.

Ndizera ko aya makuru azagufasha. Ndifuza ko umwana wawe akira vuba!

` SCID, Ubusembwa bukomeye bw'ubudahangarwa bw'umubiri, Ubusembwa bw'ubudahangarwa bw'umubiri, Abana, Indwara z'uturemangingo, Gutera amagufwa, Gupima uruhinja rukiri rushya