Ngaba wakha waphawula amabala abomvu, amabala, okanye anemibala engaqhelekanga eluswini lomntwana wakho emva nje kokuzalwa, okanye kwiiveki ezimbalwa emva koko? Ngamanye amaxesha, njengomama, ukubona oku kunokuba yinto eyoyikisayo. Namhlanje, siza kuthetha ngemeko ebangela iimpawu ezifanayo, engaqhelekanga, kodwa kubalulekile ukwazi ngayo. Oku kubizwa ngokuba yi-Incontinentia Pigmenti, okanye i-IP ngamafutshane.
Yintoni kanye kanye i-Incontinentia Pigmenti (IP)?
Ngamafutshane, le yimeko yemfuza. Ngenxa yokuba ixhomekeke kwi-X-linked dominant, ichaphazela amantombazana ngaphezu kwamakhwenkwe.
I-IP ikwiqela lezifo ezibizwa ngokuba yi-"neurocutaneous disorders". Khawuthelekelele, oku kuthetha ukuba esi sifo sinokuchaphazela inkqubo yethu yemithambo-luvo (oko kukuthi, ingqondo kunye nemithambo-luvo) kunye nolusu ngaxeshanye. Ayisiyiyo loo nto kuphela, kodwa ngamanye amaxesha inokuchaphazela namehlo, amazinyo kunye nenkqubo yamathambo.
Esi sifo sibonakala kakhulu ekuzalweni okanye kwiiveki zokuqala emva kokuzalwa, kunye namabala ahlukeneyo kunye nama-blisters avela eluswini. Oku kubangelwa kukuguquka kwe-gene ebizwa ngokuba yi-NEMO (NF-kappaB essential modulator), elawula ukusebenza kunye nokukhula kweeseli zethu. Okwangoku, akukho nyango lupheleleyo loku, kodwa kukho unyango olufanelekileyo lokulawula iimpawu.
Zithini iinguqu eluswini? Kukho amanqanaba ama-4!
Utshintsho lolusu kwi-IP lunokuchongwa ngamanqanaba amane aphambili. Kodwa khumbula, la manqanaba akufuneki enzeke ngokulandelelana. Ngamanye amaxesha anokutshintshana, kwaye amanqanaba amabini okanye amathathu anokubonwa ngaxeshanye.
| Iqonga | Inkangeleko kunye neNkcazelo |
|---|---|
| Inqanaba 1: I-Vesicular | Oku kubonakala ngokubonakala kwamadyungudyungu abomvu, azele ngamanzi emzimbeni. La madyungudyungu ahlala ebonakala ezandleni nasezinyaweni. |
| Inqanaba lesi-2: I-Verrucal | Kuvela izilonda ezintsha ezifana neentsumpa apho kwakukho khona amaqhuqhuva. |
| Inqanaba lesi-3: Ukwanda kwebala | Olu lolona phawu lubalaseleyo lwesi sifo. Ulusu lubonakala lungwevu, luhlaza okwesibhakabhaka, okanye lumdaka, lunemigca emabhile okanye egobileyo. Ezi zibonakala rhoqo emzimbeni nasemalungeni. |
| Inqanaba lesi-4: Ukuncipha kombala wesikhumba | Ekuhambeni kwexesha, loo mabala amnyama ayaphela, eshiya ngasemva izilonda ezimthubi, ezifana nezikrweqe ezimthubi ngaphezu kombala wolusu. |
Ngaba ngamabala nje esikhumba? Hayi, kusenokubakho nezinye iziphumo
Le meko ayipheleli nje eluswini. Abanye abantwana banokuba nezinye iingxaki. Nangona kunjalo, kufuneka uqonde ukuba ayizizo zonke ezi mpawu eziya kuvela kumntwana ngamnye.
Iingxaki ze-Neurological
Malunga nama-20% abantwana abane-IP banokuba neengxaki zemithambo-luvo.
- Ukulibaziseka kokukhula kwemisipha: Umzekelo, basenokungakwazi ukujika iintamo zabo, ukujika, okanye ukuhamba ngesantya esifanayo nezinye iintsana.
- Ukukhubazeka kwengqondo: Izinto ezifana nokukhubazeka kokufunda.
- Ubuthathaka bemisipha: Ukuziva ubuthathaka.
- Ukuxhuzula: Ukubakho kweemeko ezifana nezomzimba.
Oku kunokubangelwa zizinto ezifana nokushwabana kwezicubu zobuchopho (i-cerebral atrophy) kunye nokwenziwa kwemingxunya emincinci kwi-white matter yobuchopho.
Iziphumo emehlweni nakumazinyo
- Iingxaki zamehlo: Abanye abantwana banokuba neemeko ezifana ne-strabismus, i-cataracts, okanye ukulahleka okukhulu kokubona.
- Iingxaki zamazinyo: Amazinyo angekhoyo kunye namazinyo amile okwesikhonkwane anokubonakala.
Eyona nto ibalulekileyo kukungabi naxhala kwangoko xa ubona uphawu olunje, kodwa kukubona ugqirha wezingane ukuze akunike iingcebiso.
Iphathwa njani le nto?
I-IP inyangwa ngokusekelwe kwiimpawu zomntwana. Iindlela zonyango ezifanelekileyo kumntu ngamnye zinokwahluka.
| Ingxaki (Iimpawu) | Indlela Yonyango |
|---|---|
| Amabala esikhumba kunye namadyungudyungu | Iindaba ezimnandi zezokuba la mabala esikhumba adla ngokungadingi naluphi na unyango olukhethekileyo. Aziphelela ngokwawo njengoko umntwana ekhula okanye esiya ebudaleni. |
| Iingxaki zenkqubo yemithambo-luvo (ukuxhuzula, ubuthathaka bemisipha) | Kwizinto ezinje, kuya kufuneka ubone ugqirha wezifo zengqondo . Emva koko, ezi meko zinokulawulwa ngamayeza okanye, ukuba kuyimfuneko, ezinye izixhobo zonyango. |
| Ukukhubazeka kokubona | Ukuba uneengxaki zokubona, ungabonana nogqirha wamehlo uze ufumane iiglasi, amayeza, okanye, kwiimeko ezinzima, utyando. |
| Iingxaki zamazinyo | Ukuba kukho iingxaki ngokuma okanye inani lamazinyo, ungafuna unyango olufunekayo kugqirha wamazinyo. |
Ngoko ke, ngaba sifanele soyike ikamva?
Lo ngumbuzo abazali abaninzi abanawo. Enyanisweni, kwiimeko ezininzi, ukuba akukho ngxaki zinzima ngexesha lobuntwana, abantwana abane-IP banokuphila ubomi obuqhelekileyo kwaye baphile ubomi obusempilweni nobuqhelekileyo . Ekuhambeni kwexesha, loo mabala amnyama eluswini anokuphela, kwaye anokude anyamalale kwaphela.
Nangona kunjalo, njengoko bekutshiwo ngaphambili, kukho abantwana abaneengxaki zemithambo-luvo okanye ezinye iingxaki zomzimba. Ngoko ke, eyona nto ilungileyo onokuyenza kukuthetha nogqirha wakho ngemeko yomntwana wakho. Emva koko ungafumana ukuqonda okucacileyo kwesicwangciso sempilo esifanelekileyo somntwana wakho kunye nento omawuyenze ngokulandelayo.
Umyalezo Wokuya Ekhaya
- I-Incontinentia Pigmenti (IP) sisifo esingaqhelekanga semfuza esichaphazela kakhulu amantombazana.
- Uphawu oluphambili lutshintsho olulandelelanayo lolusu (amaqhuqhuva, amabala arhabaxa, amabala amnyama ashwabeneyo, kunye namabala amhlophe).
- Ukongeza kwiingxaki zolusu, abanye abantwana banokuba neengxaki ezinxulumene nenkqubo yemithambo-luvo, amehlo, namazinyo.
- Amabala esikhumba adla ngokunyamalala ngokuhamba kwexesha ngaphandle konyango.
- Uninzi lwabantwana lunokuphila ubomi obuqhelekileyo nobusempilweni ngaphandle kweengxaki ezinkulu.
- Ukuba umntwana wakho unezi mpawu, kubaluleke kakhulu ukuba ungoyiki kwaye ubone ugqirha wabantwana ukuze ufumane ingcebiso efanelekileyo.
💬 Comments (0)
Akukho zimvo zithunyelweyo okwangoku. Faka uluvo lwakho apha okokuqala.
Faka uluvo lwakho