Ngaba umntwana wakho unerhashalala nomzimba odinwayo? Masifunde ngeJuvenile Dermatomyositis (JDM).

Ngaba umntwana wakho uziva ediniwe ngaphezu kwesiqhelo, nokuba ubaleka okanye unyuka izinyuko? Okanye, ngaba unamabala abomvu/amfusa ebusweni okanye ezandleni zakhe? Ukuba unale mpawu, musa ukuzithatha njengesiqhelo. Le isenokuba yimeko eqhelekileyo ebantwaneni, kodwa abantu abaninzi abazi ngayo. Ungakhathazeki, siza kuthetha ngayo ngokucacileyo.

Yintoni i-Juvenile Dermatomyositis (JDM)?

Ngamafutshane, i-Juvenile Dermatomyositis (JDM) yimeko apho ulusu lwethu, izihlunu, kunye nemithambo yegazi zihlaselwa sisiphene kwinkqubo yethu yokuzikhusela komzimba. Ezi zifo sizibiza ngokuba zizifo zokuzikhusela komzimba. Kule meko, kukho ukudumba emzimbeni. Oku kubangela ukurhawuzelela kwesikhumba kunye nobuthathaka bemisipha . Igama elithi "Juvenile" lithetha oku kuba kuqala ebuntwaneni, oko kukuthi, ebuntwaneni.

Esi sifo sinokwenza kube nzima kumntwana ukuphakama, ukubaleka, ukunyuka izinyuko, nokwenza imisebenzi yemihla ngemihla efana nokuphakamisa iingalo zakhe nokukama iinwele zakhe. Njengomzali, kunokuba nzima kakhulu ukubona umntwana esokola ngolu hlobo. Kodwa eyona nto ibalulekileyo kukuba ngonyango olufanelekileyo, ezi mpawu zinokulawulwa kakuhle kwaye umntwana unokuphila ubomi obulungileyo .

Ngubani onokuthi afumane esi sifo?

I-JDM idla ngokuqala kubantwana abaphakathi kweminyaka emi-5 neli-10 ubudala. Ixhaphake kakhulu kumantombazana kunamakhwenkwe. Nangona inokuchaphazela nawuphi na umntwana, ixhaphake kakhulu kubantwana abamhlophe.

Abantu abadala nabo banokuba nazo ezi mpawu. Kodwa zihlala zibonakala kwiminyaka yoo-40 noo-50. Ibizwa ngokuba yiDermatomyositis. Zombini zikwiqela elinye leemeko.

Ziziphi iimpawu eziphambili ze-JDM?

Umntwana usenokubonisa iimpawu zokuqala zesi sifo nangaphambi kokuba sixilongwe. Iimpawu eziphambili zesi sifo ziquka utshintsho lolusu kunye nobuthathaka bemisipha. Masizijonge ngokwahlukeneyo ezi zinto.

Iimpawu ezinokwenzeka kwiimeko ezinzima

Ezi zihlala zingaqhelekanga. Nangona kunjalo, ukuba i-JDM iba yingozi, inokuchaphazela nokuphefumla komntwana kunye nokuginya izihlunu . Ezi mpawu zingabandakanya:

• Ukutya kuhlala kubambekile xa kuginywa.
• Utshintsho lwelizwi, lubuthathaka.
• Ubunzima bokuphefumla (i-Dyspnea).

Zithini iingxaki ezinokubakho xa zinganyangwa?

Musa ukoyika oku. Oku malunga noko kunokwenzeka ukuba awufumani unyango. Ngonyango oluphambili lwanamhlanje, uninzi lwezi zinto zinokuthintelwa.

• Iikhalsiyam ezidityanisiweyo: Amaqhuma aqinileyo, afana nelitye anokwenzakala phantsi kolusu. La maqhuma anokwenza kube nzima ukushukumisa izihlunu.
• Ukuqina kwemisipha: Imisipha iyaqina kwaye inokubakho nokuba amalungu agobile.
• Izilonda: Izilonda zinokwenzeka eluswini okanye emathunjini.
• Ubuthathaka obukhulu: Usenokuba buthathaka kangangokuba awukwazi ukuphefumla okanye ukuginya.

Kutheni le nto i-JDM isenzeka? Yintoni isizathu?

Cinga ngale ndlela: umzimba wethu ufana nenqaba. Ngaphakathi kukho umkhosi obizwa ngokuba yinkqubo yokuzikhusela komzimba. Umsebenzi wabo kukusikhusela ngokuhlasela iintshaba zasemzini ezifana neentsholongwane kunye neebhaktheriya. Kwisifo sokuzikhusela komzimba esifana ne-JDM, lo mkhosi uqala ngempazamo ukuhlasela iiseli zethu ezilungileyo (ulusu, izihlunu).

Isizathu esichanekileyo sale nkqubo yokuzikhusela komzimba asikaziwa okwangoku, kodwa oogqirha bakholelwa ukuba oku kusenokubangelwa kukudibana kwezinto zemfuza kunye nezinto ezingqongileyo (umzekelo, usulelo lwentsholongwane).

Ugqirha uluchonga njani ngokuchanekileyo olu sifo?

Xa usisa umntwana wakho kugqirha, uza kuqala amhlole ngononophelo umntwana, ejonge izinto ezifana nokurhawuzelelwa lusu kunye namandla emisipha. Ukongeza, kunokwenziwa uvavanyo oluninzi ukuqinisekisa ukuba unesifo.

• Uvavanyo lwegazi: Olu vavanyo lunokujonga inqanaba lokuvuvukala egazini kunye nenqanaba lee-enzymes zemisipha eziveliswa xa izihlunu zonakele. Banokukhangela neeproteni ezikhethekileyo (ii-autoantibodies) ezibonwa kwi-JDM.
• I-Electromyography (EMG): Oku kuquka ukufaka ii-electrode ezincinci kakhulu ezifana neenaliti kwimisipha kunye nokulinganisa umsebenzi wazo wombane.
• I-MRI (iMagnetic Resonance Imaging): Olu vavanyo lusebenzisa imagnethi enkulu ukuze kufumaneke umfanekiso ocacileyo wokudumba kunye nokudumba ngaphakathi emzimbeni, ingakumbi kwimisipha.
• I-biopsy yemisipha: Oku kubandakanya inkqubo encinci yotyando lokususa iqhekeza elincinci kakhulu lezicubu zemisipha kwaye lihlolwe phantsi kwe-microscope. Oku kubaluleke kakhulu ukuqinisekisa ukuba yi-JDM okanye esinye isifo semisipha (umz. i-muscular dystrophy).
• I-capillaroscopy yeenzipho: Kusetyenziswa isixhobo esikhethekileyo ukuhlola imithambo yegazi emincinci (ii-capillaries) phantsi kweenzipho zomntwana ukuze kubonakale ukuba azidumbanga na. Le mithambo yegazi inokubonwa ineenguqu ezithile kubantwana abane-JDM.

Ziziphi iindlela zonyango ze-JDM?

Injongo ephambili yonyango lwe-JDM kukunciphisa ukudumba emzimbeni, ukulawula iimpawu, nokunceda umntwana aphile ubomi obulungileyo. Unyango lunokubangela amaxesha okuphumla xa iimpawu ziphela.

Amayeza

• IiCorticosteroids:Ezi zezona ntlobo ziphambili zamayeza ezinikwa kuqala. Ezi zinciphisa ukudumba ngokukhawuleza. Zinikwa ngeedosi eziphezulu ekuqaleni, emva koko idosi iyancipha kancinci njengoko iimpawu ziphela.
• I-Methotrexate: Elinye iyeza elibalulekileyo elinikwa kunye okanye emva kwe-corticosteroids. Lilawula ukusebenza kwenkqubo yomzimba yokuzikhusela.
• I-Hydroxychloroquine: Eli yeza linceda kakhulu ekulawuleni ukurhawuzelela kolusu.
• I-Intravenous immunoglobulin (IVIG): Oku kuquka ukunika ii-antibodies ezicociweyo emzimbeni ngomthambo. Oku kunokuthintela ii-antibodies ezonakalisa imizimba yethu.
• Amanye amayeza: Ukuba imeko imbi kakhulu okanye ayiphenduli kwamanye amayeza, ugqirha angakunika amanye amayeza afana ne-cyclosporine kunye ne-rituximab.

Utshintsho kwindlela yokuphila kunye nezinye iindlela zonyango

Ukongeza kumayeza, ezi zinto zibaluleke kakhulu.

• Unyango lomzimba: Ingcali yonyango lomzimba ifundisa imithambo yokuqinisa izihlunu, ukunciphisa ukuqina kwamalungu, kunye nokwandisa ukuguquguquka.
• Ukukhuselwa lilanga: Oku kubaluleke kakhulu. Ukuvezwa lilanga kunokwenza amaqhuqhuva eluswini abe mandundu ngakumbi. Ngoko ke, kufuneka usebenzise isithambisi selanga esine-SPF engama-30 nangaphezulu rhoqo. Nxiba umnqwazi kunye neeglasi zelanga. Kuphephe ukuvezwa lilanga elinamandla phakathi kwentsimbi ye-10 kusasa ne-4 emva kwemini.
• Ukutya okunempilo: Ukutya ukutya okunesondlo okutyebileyo kwimifuno, iziqhamo, iiproteni ezingenamafutha, kunye neenkozo ezipheleleyo kunokunceda ekunciphiseni ukudumba emzimbeni.
• Unyango lokuthetha: Ingcali yokuthetha ifundisa abantwana abanobunzima bokuginya iindlela zokutya ezikhuselekileyo kunye nokuzilolonga.

Yintoni esifanele sicinge ngayo ngekamva?

Akukho nyango lwe-JDM. Kodwa ungoyiki. Iindaba ezimnandi zezokuba ngonyango, abantwana abaninzi banokuphila ubomi obuphumelelayo nobusebenzayo.

Uninzi lwabantwana luya kubuyela esiqhelweni kwiminyaka emibini emva kokuqala unyango. Usenokukwazi ukuyeka ukuthatha amayeza ngelo xesha. Nangona kunjalo, kufuneka uqhubeke nokutya ukutya okunempilo, ukuzilolonga, kunye nokukhusela elangeni ukuthintela ukuba iimpawu zingabuyi.

Abanye abantwana banokuba nesi sifo ixesha elide, okanye iimpawu zinganyamalala zize ziphinde zivele. Nangona kunjalo, i-JDM ayisosifo esisongela ubomi. Ngonyango olufanelekileyo, le meko inokulawulwa kakuhle kwaye abantwana banokuphila ubomi obuqhelekileyo njengabanye abantwana.