Ingabe ingane yakho inomkhuhlane kanye nomzimba obuthakathaka? Ake sifunde nge-Juvenile Dermatomyositis (JDM).

Ingabe ingane yakho izizwa ikhathele kakhulu kunokujwayelekile, ngisho nalapho igijima noma ikhuphuka izitebhisi? Noma, ingabe inamabala abomvu/onsomi ebusweni noma ezandleni zayo? Uma unalezi zimpawu, ungazinaki njengezivamile. Lokhu kungaba yisimo esivamile ezinganeni, kodwa abantu abaningi abazi ngakho. Ungakhathazeki, sizoxoxa ngakho ngokucacile.

Kuyini i-Juvenile Dermatomyositis (JDM)?

Kalula nje, i-Juvenile Dermatomyositis (JDM) yisimo lapho isikhumba sethu, imisipha, kanye nemithambo yegazi kuhlaselwa khona yisici esisesimisweni sethu sokuzivikela komzimba. Sibiza lezi zifo ngokuthi izifo zokuzivikela komzimba. Kulokhu, kukhona ukuvuvukala emzimbeni. Lokhu kubangela kakhulu ukuqubuka kwesikhumba kanye nobuthakathaka bemisipha . Igama elithi "Juvenile" lisho lokhu ngoba kuqala ebuntwaneni, okungukuthi, ebuntwaneni.

Lesi sifo singenza kube nzima ngengane ukuvuka, ukugijima, ukukhuphuka izitebhisi, ngisho nokwenza imisebenzi yansuku zonke njengokuphakamisa izingalo zayo nokukama izinwele zayo. Njengomzali, kungaba yinto ekhathazayo kakhulu ukubona ingane ilwa kanje. Kodwa into ebaluleke kakhulu ukuthi ngokwelashwa okufanele, lezi zimpawu zingalawulwa kahle futhi ingane ingaba nempilo enhle .

Ubani onamathuba amaningi okuthola lesi sifo?

I-JDM ivame ukuqala ezinganeni ezineminyaka ephakathi kwemi-5 neyi-10. Ivame kakhulu emantombazaneni kunabafana. Nakuba ingathinta noma yimuphi umntwana, ivame kakhulu ezinganeni ezimhlophe.

Abantu abadala nabo bangaba nalezi zimpawu. Kodwa ngokuvamile zivela eminyakeni yawo-1940 no-1950. Kubizwa ngokuthi i-Dermatomyositis. Zombili ziseqenjini elifanayo lezimo.

Yiziphi izimpawu eziyinhloko ze-JDM?

Ingane ingase ibonise izimpawu zakuqala zalesi sifo ngisho nangaphambi kokuba sitholakale. Izimpawu eziyinhloko zalesi sifo zifaka phakathi izinguquko zesikhumba kanye nobuthakathaka bemisipha. Ake sibheke lezi ngokwehlukana.

Izimpawu ezingase zivele ezimweni ezinzima kakhulu

Lokhu kuvame ukwenzeka kaningi. Kodwa-ke, uma i-JDM iba nkulu, ingathinta nokuphefumula kwengane kanye nemisipha yokugwinya . Lezi zimpawu zingase zihlanganise:

• Ukudla kuhlala kubambekile uma kugwinywa.
• Izwi liyashintsha, liba buthaka.
• Ubunzima bokuphefumula (i-Dyspnea).

Yiziphi izinkinga eziba khona uma zingelashwa?

Ungakhathazeki ngalokhu. Lokhu kumayelana nokuthi yini engenzeka uma ungatholi ukwelashwa. Ngezindlela zokwelapha ezithuthukisiwe zanamuhla, eziningi zalezi zinto zingavinjelwa.

• Ukuqongelela kwe-calcium: Kungakheka amaqhubu aqinile, afana namatshe ngaphansi kwesikhumba. Lokhu kungenza kube nzima ukunyakazisa imisipha.
• Ukugoba kwemisipha: Imisipha iyaqina futhi ingaba khona ngisho nalapho amalunga egobile.
• Izilonda: Izilonda zingase zivele esikhumbeni noma emathunjini.
• Ubuthakathaka obukhulu: Ungase ube buthakathaka kangangokuthi awukwazi ukuphefumula noma ukugwinya.

Kungani lokhu kwenzeka? Iyini imbangela?

Cabanga ngale ndlela: umzimba wethu unjengenqaba. Ngaphakathi kwawo kukhona ibutho elibizwa ngokuthi isimiso somzimba sokuzivikela. Umsebenzi wabo ukusivikela ngokuhlasela izitha zakwamanye amazwe njengama-virus namabhaktheriya. Esifweni esihlasela amasosha omzimba njenge-JDM, leli butho liqala ngephutha ukuhlasela amangqamuzana ethu amahle (isikhumba, imisipha).

Imbangela eqondile yalokhu kungasebenzi kahle kwesimiso somzimba sokuzivikela ayaziwa okwamanje, kodwa odokotela bakholelwa ukuthi kungenzeka ukuthi ibangelwa ukuhlanganiswa kwezakhi zofuzo kanye nezici zemvelo (isibonelo, ukutheleleka ngegciwane).

Udokotela usithola kanjani lesi sifo ngokunembile?

Uma uyisa ingane yakho kudokotela, izoqala ngokuyihlola ngokucophelela, ihlole izinto ezifana nokuqubuka kwesikhumba kanye namandla emisipha. Ngaphezu kwalokho, kungenziwa izivivinyo eziningana ukuqinisekisa ukuxilongwa.

• Ukuhlolwa kwegazi: Lokhu kungahlola izinga lokuvuvukala egazini kanye nezinga lama-enzyme emisipha akhiqizwa lapho imisipha yonakele. Bangabheka futhi amaprotheni akhethekile (ama-autoantibodies) abonakala ku-JDM.
• I-Electromyography (EMG): Lokhu kuhilela ukufaka ama-electrode amancane kakhulu afana nenaliti emisipheni bese kulinganiswa umsebenzi wawo kagesi.
• I-MRI (I-Magnetic Resonance Imaging): Lolu vivinyo lusebenzisa i-magnet enkulu ukuthola isithombe esicacile sokuvuvukala nokuvuvukala ngaphakathi emzimbeni, ikakhulukazi emisipheni.
• Ukuhlolwa kwemisipha: Lokhu kuhilela inqubo encane yokuhlinzwa ukuze kususwe ingxenye encane kakhulu yezicubu zemisipha bese ihlolwa ngaphansi kwesibonakhulu. Lokhu kubaluleke kakhulu ukuqinisekisa ukuthi ngabe yi-JDM noma esinye isifo semisipha (isib. i-muscular dystrophy).
• I-capillaroscopy yezinzipho: Kusetshenziswa ithuluzi elikhethekile ukuhlola imithambo yegazi emincane (ama-capillaries) ngaphansi kwezinzipho zengane ukuze kutholakale ukuthi ayivuvukile. Le mithambo yegazi ingabonakala inezinguquko ezithile ezinganeni ezine-JDM.

Yiziphi izindlela zokwelapha i-JDM?

Umgomo oyinhloko wokwelashwa kwe-JDM ukunciphisa ukuvuvukala emzimbeni, ukulawula izimpawu, nokusiza ingane ukuba iphile impilo enhle. Ukwelashwa kungadala izikhathi zokudamba lapho izimpawu zinyamalala.

Imithi

• Ama-Corticosteroids:Lezi yizinhlobo eziyinhloko zemithi ezinikezwa kuqala. Lezi zinciphisa ukuvuvukala ngokushesha. Zinikezwa ngemithamo ephezulu ekuqaleni, bese kuthi umthamo uncishiswe kancane kancane njengoba izimpawu ziphela.
• I-Methotrexate: Omunye umuthi obalulekile onikezwa nge-corticosteroids noma ngemva kwayo. Ulawula ukusebenza kwesimiso somzimba sokuzivikela.
• I-Hydroxychloroquine: Lo muthi uwusizo kakhulu ekulawuleni ukuqubuka kwesikhumba.
• I-Intravenous immunoglobulin (IVIG): Lokhu kuhilela ukunikeza ama-antibodies ahlanzekile emzimbeni ngomthambo. Lokhu kungavimba ama-antibodies alimaza imizimba yethu.
• Eminye imithi: Uma isimo sibi kakhulu noma singaphenduli kweminye imithi, udokotela angase anikeze eminye imithi efana ne-cyclosporine kanye ne-rituximab.

Izinguquko zendlela yokuphila kanye nezinye izindlela zokwelapha

Ngaphezu kwemithi, lezi zinto nazo zibaluleke kakhulu.

• Ukwelashwa ngokomzimba: Udokotela wezokwelapha ngokomzimba ufundisa ukuzivocavoca ukuqinisa imisipha, ukunciphisa ukuqina kwamalunga, nokwandisa ukuguquguquka.
• Ukuvikelwa elangeni: Lokhu kubaluleke kakhulu. Ukuchayeka elangeni kungenza ukuqubuka kwesikhumba kube kubi kakhulu. Ngakho-ke, kufanele usebenzise njalo isithako sokuvikela ilanga esine-SPF engama-30 noma ngaphezulu. Gqoka isigqoko nezibuko zelanga. Gwema ukuchayeka elangeni elinamandla phakathi kuka-10 ekuseni no-4 ntambama.
• Ukudla okunempilo: Ukudla ukudla okunomsoco okucebile ngemifino, izithelo, amaprotheni angenamafutha, kanye nokusanhlamvu okuphelele kungasiza ekunciphiseni ukuvuvukala emzimbeni.
• Ukwelapha ngenkulumo: Umelaphi wenkulumo ufundisa izingane ezinobunzima bokugwinya amasu okudla okuphephile kanye nokuzivocavoca.

Yini okufanele siyicabange ngekusasa?

Akukho ukwelashwa kwe-JDM. Kodwa ungakhathazeki. Izindaba ezinhle ukuthi ngokwelashwa, izingane eziningi zingaphila impilo ephumelelayo nesebenzayo.

Iningi lezingane lizolulama zingakapheli iminyaka emibili kusukela liqale ukwelashwa. Ungase ukwazi ukuyeka ukuthatha imithi ngaleso sikhathi. Kodwa-ke, kufanele uqhubeke nokudla kahle, ukuzivocavoca, kanye nokuvikela ilanga ukuze uvimbele izimpawu ukuthi zingabuyi.

Ezinye izingane zingase zibe nalesi sifo isikhathi eside, noma izimpawu zingase zinyamalale bese ziphinde zivele. Kodwa-ke, i-JDM ayisona isifo esisongela ukuphila. Ngokunakekelwa okufanele kwezokwelapha, lesi simo singaphathwa kahle futhi izingane zingaphila impilo evamile njengezinye izingane.