Yu dɔn ɛva notis rɛd, blɔk, ɔ strenj kɔlɔ na yu pikin in skin jɔs afta dɛn bɔn am, ɔ sɔm wiks afta dat? Sɔntɛnde, as mama, fɔ si dɛn tin ya kin mek yu fred. Tide, wi go tɔk bɔt wan sik wae kin mek pɔrsin gɛt di sem kayn sik, wae nɔr kin bɔrku, bɔt impɔtant fɔ no bɔt. Dɛn kɔl dis Incontinentia Pigmenti, ɔ IP fɔ shɔt.
Wetin na di rayt tin we dɛn kɔl Incontinentia Pigmenti (IP)?
Fɔ tɔk am simpul wan, dis na tin we pɔsin kin gɛt frɔm in jɛnɛtiks. Bikɔs i gɛt X-linked dominant, i kin afɛkt gyal pikin dɛn pas bɔy pikin dɛn.
IP de pan wan grup fכ sik dεm we dεn kכl ``nyurokutan dizכrd''. Imajin, dis min se dis sik kin afɛkt wi nervɔs sistɛm (dat na di bren ɛn nerv dɛm) ɛn di skin di sem tɛm. Nɔto dat nɔmɔ, bɔt sɔntɛnde i kin afɛkt di yay, di tit, ɛn di skel sistɛm bak.
Dɛn kin si dis sik mɔ we dɛn bɔn am ɔ insay di fɔs wik afta dɛn bɔn am, wit difrɛn spat ɛn blista dɛn we kin apia na di skin. dis de kכz f כ wan mכtεshכn na di jin we dεn kכl NEMO (NF-kappaB essential modulator), we de kכntro di wok εn di growth fכ wi sεl dεm. Te naw, no kɔmplit mɛrɛsin nɔr de fɔ dis, bɔt gud tritmɛnt dɛn de fɔ kɔntrol di sayn dɛm.
Wetin na di chenj dɛn we de apin na di skin? Na 4 stej dɛn de!
di chenj dεm we di skin de chenj na IP kin bi insay fכ men stej dεm. Bɔt mɛmba se dɛn stej ya nɔ nid fɔ apin ɔdasay. Sɔntɛnde, dɛn kin chenj chenj, ɛn dɛn kin si tu ɔ tri stej dɛn di sem tɛm.
| Stej | Apiɛns & Diskripshɔn |
|---|---|
| Stej 1: Vɛsikul | Dis kin bi bay we di blista dɛn we gɛt rɛd rɛd wata we ful-ɔp de sho na di bɔdi. Dɛn kin si dɛn tin ya mɔ na di an ɛn fut. |
| Stej 2: Vɛrukal | Nyu lɛsin dɛn we tan lɛk wɔt kin apia usay di blista dɛn bin de. |
| Stej 3: Hyperpigmentation | Dis na di tin wae de mek dis sik difrɛn pas ɔl. Di skin kin tan lɛk grey, blu, ɔ brawn, mabul ɔ wev layn dɛn. Dɛn tin ya kin apin mɔ na di bɔdi ɛn di an ɛn fut dɛn. |
| Stej 4: Hypopigmentation | As tɛm de go, dɛn dak dak ples dɛn de kin dɔn, ɛn dɛn kin lɛf smɔl smɔl say dɛn we tan lɛk skata ɛn we kin shayn pas di kɔlɔ we di skin gɛt. |
Na jɔs skin spat dɛn? Nɔ, ɔda tin dɛn kin apin bak
Dis sik nɔ kin jɔs de na di skin. Sɔm pikin dɛn kin gɛt ɔda prɔblɛm dɛn bak. Bɔt yu fɔ ɔndastand se nɔto ɔl dɛn sik ya go apin to ɔl pikin.
Nyurolɔjik Prɔblɛm dɛn
Na lɛk 20% pan di pikin dɛn we gɛt IP kin gɛt nyurolɔjik prɔblɛm.
- di mכtalman divεlכpmεnt delay: fכ egzampl, dεn nכ kin ebul fכ tכn dεn nεk, rol oba, כ waka di sem spid lεk כda pikin dεm.
- Intɛlektual disabiliti: Tin dɛm lɛk disabiliti fɔ lan.
- Mɔsul wik: Fɔ fil se yu wik.
- Seizures: Na tin wae de apin wae tan lɛk fit.
dis kin bi bay tin dεm lεk we di bren tisu de shrink (sεribra atrofi) εn we sכm sכm ol dεm de fכm na di wayt tin na di bren.
Ifekt pan yay ɛn tit
- Prɔblɛm wit dɛn yay: Sɔm pikin dɛn kin gɛt tin dɛn lɛk strabismus, katarakt, ɔ we dɛn nɔ kin si bad bad wan.
- Prɔblɛm dɛn we de na di tit: Yu kin si di tit dɛn we nɔ de ɛn di tit dɛn we tan lɛk peg.
Di tin we impɔtant pas ɔl na fɔ nɔ panik jɔs lɛk aw yu si dis sik, bɔt fɔ go to dɔktɔ we de mɛn pikin dɛn fɔ advays.
Aw dɛn kin trit dis?
Dɛn kin trit IP bay di pikin in simptom dɛm. Di tritmɛnt we dɛn kin pik fɔ ɛni pikin kin difrɛn.
| Prɔblɛm (Symptom) . | Di we aw fɔ trit am |
|---|---|
| Spɔt dɛn na di skin ɛn blista dɛn | Di gud nyus na dat, bɔku tɛm dɛn skin spat ya nɔ kin nid ɛni spɛshal tritmɛnt. Dɛn go mɔs dɔn fɔ dɛnsɛf as di pikin de ol ɔ i de big. |
| Prɔblɛm dɛn we de na di nervɔs sistɛm (say, we di mɔsul dɛn wik) . | Fɔ tin dɛn lɛk dis, yu fɔ go to dɔktɔ we de mɛn yu nyuro . Dɔn, dɛn kin kɔntrol dɛn tin ya wit mɛrɛsin ɔ if nid de, dɛn kin yuz ɔda tin dɛn fɔ mɛn pipul dɛn. |
| Di we aw pɔsin nɔ de si fayn | Fɔ prɔblɛm wit yu yay, yu kin go to dɔktɔ we de mɛn yu yay ɛn gɛt glas, mɛrɛsin, ɔ if i bad, dɛn kin du am ɔpreshɔn. |
| Prɔblɛm dɛn we gɛt fɔ du wit di tit | If prɔblɛm de wit di shep ɔ nɔmba fɔ di tit, yu kin go to di tritmɛnt we yu nid frɔm dɛntist. |
So, yu tink se wi fɔ fred tumara bambay?
Dis na kwɛstyɔn we bɔku mama ɛn papa dɛn gɛt. Infakt, bɔku tɛm, if no siriɔs prɔblɛm nɔ de we dɛn smɔl, pikin dɛn we gɛt IP kin liv nɔmal layf ɛn liv kɔmplit wɛlbɔdi, nɔmal layf . As tɛm de go, dɛn dak dak say dɛn de na di skin kin dɔn, ɛn dɛn kin ivin dɔnawe wit dɛn ɔl.
Bɔt lɛk aw wi bin dɔn tɔk, pikin dɛn de we gɛt nyurolɔjik ɔ ɔda prɔblɛm dɛn na dɛn bɔdi. So, di bɛst tin fɔ du na fɔ tɔk to yu dɔktɔ bɔt di sik we yu pikin gɛt. Dɔn yu kin ɔndastand klia wan wetin na di bɛst wɛlbɔdi plan fɔ yu pikin ɛn wetin fɔ du nɛks.
Mɛsej we dɛn kin kɛr go na os
- Incontinentia Pigmenti (IP) na wan jεnεtik kכndyushכn we nכ kin apin we kin afekt gyal pikin dεm bכku bכku wan.
- Di men sayn na di chenj we de apin na di skin (blista, rɔf pat, dak wrinkled pat, ɛn pale pat).
- Apat frɔm di prɔblɛm dɛn we dɛn kin gɛt na dɛn skin, sɔm pikin dɛn kin gɛt prɔblɛm dɛn we gɛt fɔ du wit dɛn nervɔs sistɛm, dɛn yay, ɛn dɛn tit.
- Bɔku tɛm, di spat dɛn na di skin kin dɔn as tɛm de go if dɛn nɔ gɛt tritmɛnt.
- Bɔrku pikin dɛn kin liv nɔrmal, wɛl bɔdi layf ɛn nɔr gɛt siriɔs prɔblɛm.
- If yu pikin gɛt dɛn sik ya, i rili impɔtant fɔ mek yu nɔ fred ɛn fɔ go to dɔktɔ we de mɛn pikin dɛn fɔ gɛt di rayt advays.
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