Ese urimo ubona utudomo tudasanzwe ku ruhu rwawe? Ese byaba biterwa na (Incontinentia Pigmenti)?

Ese wigeze wumva iyi ndwara yitwa `(Incontinentia Pigmenti)` cyangwa `(IP)`? Wenda iyo wumvise iri zina, rishobora kumvikana nk'iry'urujijo kandi ritangaje. Ariko iyi ni ingingo y'ingenzi tugomba kuvugaho, kuko ni indwara idakunze kugaragara mu buryo bw'uturemangingo ishobora gufata abana bamwe, cyane cyane abakobwa. Uyu munsi rero turaza kuvuga ku bintu byinshi mu buryo bworoshye, nko kumenya `(Incontinentia Pigmenti)`, ibimenyetso byayo ni ibihe, n'uko ivurwa.

`(Incontinentia Pigmenti)` ni iki? Reka tubisobanukirwe mu buryo bworoshye!

Mu magambo make, Incontinentia Pigmenti ni indwara ikomeye iterwa na X. Ushobora kuba utekereza uti "Oh, muganga, sinsobanukiwe ibi." Reka turusheho kubyoroshya. Ni indwara ihererekanywa binyuze mu magene, bivuze ko ihererekanywa kuva ku mubyeyi kugeza ku mwana. Iri mu itsinda ry'indwara zitwa indwara zo mu bwonko. Ibi bivuze ko ubwo bwoko bw'indwara bushobora kugira ingaruka ku mitsi yacu yo hagati (ni ukuvuga ubwonko n'umugongo), uruhu, amaso, amenyo, n'amagufwa .

Ku bijyanye na `(IP)`, impinduka zimwe na zimwe (mutations) mu turemangingo twacu zitera kugaragara buhoro buhoro kw'utudomo n'udusimba ku ruhu. Iki ni cyo kimenyetso nyamukuru kandi gikunze kugaragara cy'iyi ndwara. Utu duto ku ruhu dushobora kugaragara mu gihe cyo kuvuka, kandi rimwe na rimwe dushobora kugaragara ndetse n'ibyumweru bike nyuma yo kuvuka.

Hari ubwoko bune bw'ibizinga ku ruhu!

Utu duheri tw'uruhu dushobora kugaragara kimwe kimwe, mu byiciro bine. Hari igihe ibi byiciro bishobora gukurikiranya, cyangwa ikindi cyiciro kikagaragara nyuma y'ikindi. Tekereza nk'ibihe bihinduka, ariko rimwe na rimwe igihembwe kimwe kirangira mbere y'uko ikindi gitangira.

1. Icyiciro cyo kurwara imitsi: Iki ni cyo gihe hagaragara uduheri duto, dutukura, twuzuye amazi ku ruhu. Dusa n'uduheri tugaragara mu gihe cy'icyorezo. Dushobora kugaragara nk'imitsi ku mubiri wose, cyane cyane ku maguru.

2. Icyiciro cyo kugaragara: Uko igihe kigenda gihita , utudomo tumeze nk'uduheri, twazamutse, twazamutse dutangira kugaragara aho uduheri twari turi. Rimwe na rimwe dushobora kumara amezi menshi.

3. Icyiciro cyo gupima ibara ry'uruhu: Hanyuma, hagaragara ibizinga by'umukara n'imvi ku ruhu. Bigaragara ku mubiri no ku maguru mu buryo butari bwo, bisa n'imiterere y'amabuye cyangwa imirongo y'amabara . Ibi bizinga ni imwe mu mpamvu zatumye izina `(Incontinentia Pigmenti)` ritangizwa. "Pigmenti" bivuze ibara ry'uruhu. Iki cyiciro gishobora kumara imyaka myinshi.

4. Icyiciro cyo gupima ubushyuhe bw'izuba: Amaherezo, utudomo twijimye tuzasimburwa n'utudomo twijimye, rimwe na rimwe tumeze nk'inkovu . Akenshi dushobora kumara ubuzima bwose.

Igikuru ni uko atari buri wese uzagira ibi bihe bine byose muri uru rutonde. Hari abantu bashobora kubona umwanya umwe gusa mu buryo bugaragara, abandi bakabona byinshi icyarimwe.

Akenshi, IP iterwa n'impinduka mu ngirabuzimafatizo yitwa NEMO (NF-kappaB essential modulator). Iyi ngirabuzimafatizo ya NEMO ni ngirabuzimafatizo y'ingenzi ifasha kugenzura imikorere y'uturemangingo mu mubiri wacu ndetse inafasha mu gupfa kw'uturemangingo. Ikibabaje ni uko nta muti wihariye wa IP uraboneka kugeza ubu.

Ni izihe ngorane zishobora guterwa na `(Incontinentia Pigmenti)`?

IP si indwara y'uruhu gusa. Hari igihe ishobora no guteza izindi ngorane z'ubuzima. Ni ingenzi cyane ko natwe tubimenya.

Ibibazo by'imitsi

• Kugabanuka k'ubwonko.
• Utwobo duto mu gice cy'umweru kiri hagati mu bwonko.
• Kwangirika kw'uturemangingo tw'imitsi muri cerebellar cortex.

Kubera izi mpamvu, hafi 20% by'abana bafite `(IP)` bashobora kugira ibi bikurikira:

• Ubuhanga bwo gutinda mu mikorere y'umubiri (urugero: gutinda kuzamuka, gutinda kugenda).
• Ubumuga bwo mu mutwe (nk'ubumuga bwo kwiga).
• Intege nke z'imitsi.
• Kugira indwara yo kurwara (gufatwa n'ibisebe).

Ibibazo byo kutabona neza

Bamwe mu bana bafite `(IP)` bashobora no kugira ibibazo byo kutabona. Urugero:

• Amaso afite uruhu (strabismus).
• Indwara zo mu kanwa.
• Mu bihe bimwe na bimwe bikomeye, umuntu ashobora kutabona neza .

Ibibazo by'amenyo

Ibibazo by'amenyo bishobora no kugaragara kuri `(IP)`.

• Amenyo amwe arabura.
• Amenyo afite ishusho nk'iy'agashishwa.
• Kura amenyo bitinze.

Niyo mpamvu ari ingenzi cyane gushaka inama kwa muganga w'amenyo.

Niki `(Incontinentia Pigmenti Achromians)`?

Indi ndwara isa n'iyi ni `(incontinentia pigmenti achromians)`. Muri iyi ndwara, uruhu rugira iminkanyari y'amabara yoroheje, yerurutse (hypopigmented) n'imirongo . Bitandukanye n'uduheri twijimye muri `(IP)`, iyi ndwara ifite uduheri tw'amabara y'urumuri gusa. Ariko, kimwe na `(IP)`, iyi ndwara `(incontinentia pigmenti achromians)` ishobora no kujyana n'ibibazo mu mitsi.

Nigute `(Incontinentia Pigmenti)` ifatwa?

Nkuko twabivuze mbere, nta muti wihariye wa `(IP)` uraboneka kugeza ubu. Ariko, hari uburyo butandukanye bwo kuvura bukoreshwa mu kugenzura ibimenyetso n'ingorane ziterwa n'iyi ndwara. Ubuvuzi bugenwa n'ibimenyetso bya buri muntu.

• Uduheri ku ruhu: Akenshi, utu duheri ku ruhu, cyane cyane uduheri n'uduheri twinshi tugaragara mu ntangiriro, dushira buhoro buhoro nta muti, haba mu gihe cy'ubwangavu cyangwa mu gihe cy'ubukure.Ibyo bitonyanga byijimye (hyperpigmentation) n'ibitonyanga by'urumuri (hypopigmentation) bishobora kumara igihe kirekire, rimwe na rimwe ubuzima bwose. Ariko akenshi ntabwo bitera ububabare ubwo aribwo bwose.
• Ibimenyetso by'imitsi: Niba ufite indwara yo gucika intege, intege nke z'imitsi, cyangwa imitsi idafite imbaraga, umuganga w'indwara z'imitsi ashobora kukwandikira imiti n'ibikoresho bimwe na bimwe by'ubuvuzi .
• Ibibazo byo kutabona neza: Niba ufite ikibazo cyo kutabona neza, muganga wawe ashobora kukugira inama yo kureba indorerwamo, imiti, cyangwa, mu bihe bikomeye, kubagwa .
• Ibibazo by'amenyo: Inzobere mu by'ubuvuzi bw'amenyo zishobora kuvura ibibazo by'amenyo. Zishobora gukora ibintu nko kuzuza amenyo n'amenyo y'amenyo.

Ubuzima buzaba bumeze bute iyo umuntu afite ikibazo cya `(Incontinentia Pigmenti)`? (Ibisobanuro)

Iki ni ikibazo ku bantu benshi. Si abantu bose bafite IP bahura n'ingorane zikomeye. Abantu benshi, cyane cyane abatahura n'ingorane zikomeye mu bwana cyangwa mu bwana, bashobora kubaho ubuzima busanzwe kandi bufite ubuzima bwiza. Udupira tw'uruhu dukunze kugaragara ku ruhu duhita dushira uko igihe kigenda, rimwe na rimwe tugashira burundu.

Ariko, hari abantu bashobora gukomeza kugira ibibazo byo mu bwonko no ku mubiri. Niba wowe cyangwa umwana wawe mufite IP, ni byiza kuvugana na muganga wawe cyangwa umujyanama mu by’uturemangingo kugira ngo baguhe gahunda nziza y’ubuvuzi.

Abashakashatsi ubu barimo gukora ubushakashatsi ku bijyanye n'imiterere y'uturemangingo kugira ngo bamenye aho uturemangingo dufitanye isano n'indwara z'ubwonko nka IP duherereye. Bari kandi kwiga uburyo izi mpinduka mu turemangingo zigira ingaruka ku iterambere n'imikorere y'ubwonko n'imitsi. Ubushakashatsi nk'ubu buzadufasha gusobanukirwa byinshi ku ndwara z'uturemangingo kandi bushobora gutegurira inzira uburyo bwo kuvura mu gihe kizaza.

Ibintu by'ingenzi cyane ugomba kwibuka (Ubutumwa bwo kujyana mu rugo)

• Incontinentia Pigmenti ni indwara idakunze kugaragara, iterwa n'uturemangingo, ikaba yibasira cyane cyane uruhu, ariko ishobora no kugira ingaruka ku mitsi, amaso n'amenyo.
• Ibizinga by'uruhu bishobora kugaragara mu byiciro bine. Ibi bikunze gushira uko igihe kigenda gihita.
• Si buri wese ugira ibibazo bikomeye. Abantu benshi bashobora kubaho ubuzima busanzwe.
• Ubuvuzi bugenwa n'ibimenyetso. Ushobora gusaba ubufasha ku nzobere mu buvuzi bw'imitsi, ubuvuzi bw'amaso, n'ubuvuzi bw'amenyo.
• Niba wowe cyangwa umwana wawe mufite impungenge kuri iyi ndwara, shaka ubufasha bwa muganga vuba. Ikintu cy'ingenzi ni ukudatinya, gushaka amakuru akwiye, no gushaka ubuvuzi bukenewe.

Ndizera ko aya makuru azagufasha. Niba ufite ikibazo icyo ari cyo cyose, ntugatinye kubaza muganga. Twese turi hano kugufasha.

Incontinentia Pigmenti, IP, indwara z'uruhu, indwara z'uturemangingo, gene ya NEMO, ibizinga by'uruhu, indwara z'imitsi, indwara z'abana