Ngaba umntwana wakho uziva ediniwe kancinci? Ngaba kubonakala ngathi unengxaki yokunyuka izinyuko, ukubaleka, okanye ukudlala? Ngaba unamabala abomvu-mfusa esikhumba ajikeleze amehlo nezidlele zakhe? Ngamanye amaxesha sicinga ngezi zinto njenge-allergy elula, kodwa oku kunokuba yinto enzulu ngakumbi. Namhlanje sithetha nge-Juvenile Dermatomyositis, okanye i-JDM ngamafutshane, imeko engaqhelekanga echaphazela abantwana kwaye ineempawu ezifanayo. Musa ukoyika igama elide, masichaze yonke into ngokulula.
Yintoni i-Juvenile Dermatomyositis (JDM)?
Ngamafutshane, i-JDM yimeko apho inkqubo yokuzikhusela yomzimba wethu, inkqubo yokuzikhusela komzimba , ngequbuliso iqalisa ukuhlasela amalungu asempilweni omzimba wethu. Ngokukodwa, ichaphazela kakhulu ulusu lwethu, imithambo yegazi emincinci, kunye nemisipha . Kwizonyango, izifo apho inkqubo yethu isebenza nxamnye nathi zibizwa ngokuba 'zizifo ezizikhusela ngokwazo' . Khawuthelekelele ukuba umkhosi okhusela ilizwe lethu uhlasela abantu bethu.
Le meko ibangela ukuba izihlunu zomntwana zibe buthathaka. Oku kwenza kube nzima ngaye ukuma, ukunyuka izinyuko, ukubaleka, ukudlala, kwaye ngamanye amaxesha enze izinto ezilula ezifana nokukama iinwele zakhe. Njengomzali, kuyaqondakala ukuba uzive ulusizi kwaye usoyika xa usiva ngayo nayiphi na imeko yezonyango ethintela umntwana wakho ekwenzeni imisebenzi yemihla ngemihla. Kodwa eyona nto ilungileyo kukuba unyango lwe-JDM lunokulawula ngempumelelo iimpawu kwaye lwenze ubomi bomntwana wakho bube ngcono kakhulu.
Ngubani onokuthi abe nale meko?
I-JDM sisifo esingaqhelekanga kakhulu. Sidla ngokuqala kubantwana abaphakathi kweminyaka emi-5 neli-10 ubudala. Sixhaphake kabini kumantombazana kunakumakhwenkwe. Nangona sinokuchaphazela nawuphi na umntwana, uphando lufumanise ukuba sixhaphake kakhulu kubantwana abamhlophe.
Abantu abadala nabo banokuba nazo ezi mpawu. Kodwa ngokuqhelekileyo kwenzeka kwiminyaka yoo-40 okanye yoo-50. Xa esi sifo sikhula kubantu abadala, sibizwa ngokuba yiDermatomyositis . I-JDM kunye neDermatomyositis zombini zikwiqela elinye, oko kukuthi, zizifo ezimbini ezikwiqela lezifo ezivuthayo zemisipha ezibizwa ngokuba yiMyositis .
Ziziphi iimpawu zokuqala ze-JDM?
Ngaphambi kokuba isifo sifunyaniswe, ungabona utshintsho oluthile kumntwana wakho. Ezi zisenokuba ziimpawu zokuqala zesifo. Ukuba uzinika ingqalelo, ungabona ugqirha kwangethuba.
| Isici sokuqala | Ingcaciso elula |
|---|---|
| Ukudinwa rhoqo | Umntwana uziva ediniwe ngalo lonke ixesha aze aphelelwe ngumdla wokubaleka nokudlala njengangaphambili. |
| Umkhuhlane ngaphandle kwesizathu | Usenokuziva ushushu okanye udikidiki ngaphandle kwesizathu esinye. |
| Ukudumba okanye ukuqina kwamalungu | Xa uvuka kusasa, amalungu akho aziva eqine, mhlawumbi evuvukile kancinci. |
| Umnqweno wokutya | Umnqweno wokutya uyancipha, kwaye usenokungasaceli ukutya njengangaphambili. |
| Intlungu yemisipha | Umntwana usenokuthi izihlunu zakhe ziyaqaqamba xa esenza imisebenzi eqhelekileyo okanye edlala. |
| Ukunciphisa umzimba ngaphandle kwesizathu | Ukuba ubunzima bomntwana buyancipha ngaphandle kokulawula ukutya kwakhe, kufuneka ukhathazeke. |
| Ukuqhambuka kwesikhumba | Irhashalala lisenokuvela ebusweni nasezizandleni. Utshintsho lolusu lunokwanda xa lubekwe elangeni. |
Masithethe nzulu ngeempawu ezimbini eziphambili zesifo.
Xa i-JDM iqinisekisiwe, kukho iimpawu ezimbini eziphambili eziqhubekayo: utshintsho lolusu kunye nobuthathaka bemisipha.
1. Irhashalala lolusu
Abantwana abane-JDM banokuba nerhashalala yesikhumba ekhethekileyo.
- Utshintsho lobuso: Oku kuqala ngezidlele kunye neenkophe zijika zibe bomvu okanye zibe mfusa . Ngamanye amaxesha iinkophe zibonakala zidumbile, ngoko oogqirha basenokuqala ngokucinga ukuba yi-allergy nje.
- Iinzipho zeminwe, amadolo, kunye neengqiniba: Ekuhambeni kwexesha, amabala abomvu okanye amaqhuma anokuvela kwiinzipho zeminwe, amadolo, kunye neengqiniba zomntwana wakho. Ekuqaleni, ezi zinto zinokubonakala njenge-eczema okanye i-psoriasis.
- Uvakalelo elangeni: Olu luphawu olubaluleke kakhulu. Xa umntwana one-JDM evezwa lilanga, olu rhawuzelelo luba lubi ngakumbi .
2. Ubuthathaka beMisipha
Olu lolunye uphawu oluphambili noluphazamisayo lwe-JDM. Olu buthathaka luvakala kakhulu kwimisipha ekufutshane nombindi womzimba. Oko kukuthi:
- Amagxa
- Intamo
- Indawo yesinqe
- Izihlunu zesisu
- Iingalo nemilenze ephezulu
Xa ezi zihlunu zibuthathaka, kunokuba nzima kakhulu kumntwana ukwenza imisebenzi yemihla ngemihla. Umzekelo, ukuphakama kwindawo yakhe yokuhlala, ukunyuka izinyuko, ukuphuma esitulweni, ukubaleka, kunye nokukama iinwele zakhe kunokuba nzima.
Kwiimeko ezinzima kakhulu, i-JDM inokuchaphazela ukuphefumla komntwana kunye nokuginya izihlunu . Oku kunokubangela ukukrwitshwa, ukurhawuzelela, kunye nobunzima bokuphefumla (ukuphelelwa ngamandla).
Zeziphi iingxaki ezinokwenzeka ukuba azinyangwa?
I-JDM yimeko yezonyango efuna unyango olukhawulezileyo. Ukuba ayinyangwa, iingxaki ezinkulu zinokwenzeka.
- Iikhalsiyam ezidityanisiweyo: Amaqhuma aqinileyo, anjengetshokhwe anokwenzakala phantsi kolusu. La maqhuma anokuthintela intshukumo yemisipha aze abangele iintlungu.
- Ukuqina kwemisipha: Imisipha iyafinyezwa ize iqale ukuqina xa amalungu egobile. Oku kunokwenza kube nzima ukwandisa ilungu.
- Izilonda: Izilonda zinokwenzeka eluswini okanye kwindlela yokugaya ukutya.
- Ubuthathaka obukhulu: Ubuthathaka obukhulu bokuphefumla nokuginya izihlunu bunokuba yingozi ebomini.
Kodwa ungoyiki emva kokufunda oku. Oku kuthetha ukuba ukuba awunyangwa,Yintoni enokwenzeka? Ngaphambili, xa kwakungekho nyango lusebenzayo lwesi sifo, malunga nomnye kubantwana abathathu abane-JDM wafa. Kodwa namhlanje, ngonyango oluphuculweyo, ngaphezulu kwama-98% abantwana bayaphila emva kweminyaka emihlanu bexilongiwe. Yiyo loo nto ukuxilongwa kwangoko kunye nonyango olufanelekileyo kubaluleke kakhulu.
Kutheni oku kusenzeka? Yintoni imbangela ye-JDM?
Njengoko besitshilo ngaphambili, i-JDM sisifo esibangelwa kukuzikhusela komzimba. Kodwa kutheni inkqubo yethu yomzimba ijika isichase ngequbuliso? Oogqirha abakafumani sizathu sithile soku .
Kodwa kukho iingcamango ezininzi ngale nto. Enye ingcamango ephambili kukuba xa into ethile, njengosulelo lwentsholongwane, ingena emzimbeni, inkqubo yethu yokuzikhusela komzimba iqala ukulwa nayo. Nangona kunjalo, nangona usulelo luphelile, le nkqubo yokuzikhusela yomzimba ayiyeki ukulwa. Endaweni yoko, kukholelwa ukuba iyaqhubeka nokusebenza kwaye iqala ukuhlasela iiseli zomzimba wethu. Abaphandi bakwakholelwa ukuba kunokubakho icandelo lemfuza koku.
Ugqirha usixilonga njani esi sifo? (Ukuxilongwa)
Xa usisa umntwana wakho kugqirha, uza kuqala amhlole ngononophelo umntwana. Ngokukodwa, baza kujonga ukuba akanayo na irhashalala lolusu kunye namandla emisipha. Emva koko baza kukubuza ngeempawu zakho.
Kwenziwa iimvavanyo ezininzi ukuqinisekisa ukuxilongwa ngokuchanekileyo.
- Uvavanyo lwegazi: Akukho vavanyo lwegazi lulodwa olunokuxilonga i-JDM ngoko nangoko. Nangona kunjalo, uvavanyo lwegazi lunokujonga izinto ezifana namanqanaba okuvuvukala emzimbeni, amanqanaba ee-enzymes zemisipha eziqokelelana egazini xa izihlunu zonakele, kunye neeproteni ezithile (ii-autoantibodies) eziqhele ukubonwa kwi-JDM.
- I-Electromyography (EMG): Kolu vavanyo, kufakwa ii-electrode ezincinci ezifana neenaliti kwimisipha kwaye umsebenzi wombane wezo misipha uyalinganiswa. Oku kunokunceda ekufumaneni naziphi na iingxaki ekusebenzeni kwemisipha.
- I-MRI (Magnetic Resonance Imaging): I-MRI scan inokuvelisa imifanekiso eneenkcukacha zangaphakathi lomzimba. Ingabona ngokucacileyo izinto ezifana nokudumba okuncinci kakhulu kunye nokuvuvukala kwimisipha.
- I-biopsy yemisipha: Kule nkqubo, kwenziwa utyando oluncinci ukuze kususwe iqhekeza elincinci kakhulu lesicubu kwisihlunu esichaphazelekayo size sihlolwe phantsi kwe-microscope. Oku kunokunceda ekuqinisekiseni ukuba kukho ukudumba kwimisipha kwaye nokuba kubangelwa yi-JDM okanye esinye isifo, njengeMuscular Dystrophy .
- I-capillaroscopy yeenzipho:Olu luvavanyo olulula kakhulu, olungenabuhlungu. Isixhobo esinokukhanya okukhethekileyo kunye nelensi yokukhulisa sisetyenziselwa ukuhlola imithambo yegazi emincinci phantsi kwezinzipho zomntwana. Le mithambo yegazi idla ngokudumba kubantwana abane-JDM.
Ziziphi iindlela zonyango ze-JDM?
Injongo ephambili yonyango lwe-JDM kukunciphisa ukudumba emzimbeni nokuphucula umgangatho wobomi bomntwana. Nangona abantwana abaninzi kufuneka baphile ne-JDM iminyaka eliqela, unyango lunokulawula iimpawu kakuhle. Emva konyango, abantwana abaninzi bahlala iinyanga okanye iminyaka bengenazo iimpawu. Oku sikubiza ngokuba 'kukukhululwa' .
Iindlela zonyango zinokwahlulwa zibe ziinxalenye ezimbini eziphambili.
| Indlela yonyango | Inkcazo |
|---|---|
| Amayeza | |
| Ii-Corticosteroids | Ezi zezona ntlobo ziphambili zamayeza anikwa kuqala. Anciphisa ngokukhawuleza ukudumba emzimbeni kwaye alawula nokusebenza kwenkqubo yomzimba yokuzikhusela. |
| I-Hydroxychloroquine | Eli yeza lidla ngokusetyenziswa ukulawula ukurhawuzelela kolusu. |
| I-immunoglobulin efakwa kwimithambo yegazi (IVIG) | Kule meko, ii-antibodies ezicociweyo ezivela kubanikeli begazi abasempilweni zinikwa umzimba ngesisombululo se-saline. Ezi zithintela ii-antibodies eziyingozi kwaye zizolise inkqubo yomzimba yokuzikhusela. |
| I-Methotrexate | Eli yeza linikwa phantse bonke abantwana abane-JDM. Likwacinezela inkqubo yomzimba yokuzikhusela kwaye linceda ekunciphiseni ukusetyenziswa kwee-steroids. |
| Indlela Yokuphila Nezonyango | |
| Utshintsho kwindlela yokutya | Ukutya okunesondlo okuneziqhamo, imifuno, inyama engenamafutha amaninzi, amafutha asempilweni, kunye neenkozo ezipheleleyo kunokunceda ekunciphiseni ukudumba. Ukuba unengxaki yokuginya, unokufuna ingcebiso ekhethekileyo yesondlo. |
| Ulungiso lwenyama | Ingcali yezonyango iza kunika umntwana imithambo eyomeleza izihlunu, ithintele ukuqina kwamalungu, kwaye ithintele iintlungu. |
| Unyango lweNtetho | Ukuba izihlunu ezibandakanyeka ekuginyeni okanye ekuphefumleni zibuthathaka, ingcali yokuthetha ingakunceda ekunyamezeleni imeko kunye neendlela zokutya ezikhuselekileyo. |
| Ukukhuselwa lilanga | Oku kubaluleke kakhulu . Soloko usebenzisa i-sunscreen ene-SPF engama-30 nangaphezulu. Nxiba iminqwazi, iiglasi zelanga, kunye nempahla egubungela umzimba wakho. Kubaluleke kakhulu ukukhusela umntwana wakho elangeni elinamandla phakathi kwentsimbi ye-10 kusasa kunye ne-4 emva kwemini. |
Umyalezo Wokuya Ekhaya
- I-Juvenile Dermatomyositis (JDM) sisifo esingaqhelekanga sokuzikhusela komzimba esichaphazela abantwana. Oku kuthetha ukuba inkqubo yomzimba yokuzikhusela ihlasela ulusu kunye nemisipha.
- Iimpawu eziphambili kukurhawuzelelwa okubomvu-mfusa eluswini (ingakumbi ebusweni nasemaqakaleni) kunye nobuthathaka bemisipha. Yiba nexhala ukuba umntwana wakho ubonisa iimpawu zokudinwa okanye ubunzima bokunyuka izinyuko.
- Oku akuyonto ibalulekileyo yokoyika. Ngonyango oluphambili lwanamhlanje, iimpawu zinokulawulwa kakhulu kwaye umntwana angaphila ubomi obuqhelekileyo nobusebenzayo.
- Ukuzikhusela elangeni kubaluleke kakhulu. Ziqhelise ukusebenzisa i-sunscreen yonke imihla kwaye unxibe umnqwazi. Oku kubalulekile ekulawuleni esi sifo.
- Ukuba unesikrokro sokuba umntwana wakho unenye yezi mpawu, qhagamshelana nogqirha ofanelekileyo ngoko nangoko . Ukuxilongwa ngokukhawuleza kunye nonyango kunokuqinisekisa ikamva lomntwana.
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