Yu skin kin rili fil bad we di san de shayn? Dis kin bi (Xeroderma Pigmentosum - XP)!

Tide wi go tɔk bɔt wan wɛlbɔdi prɔblɛm we pipul dɛn nɔ no bɛtɛ, bɔt we rili impɔtant. Yu dɔn ɛva notis aw sɔm pipul dɛn kin bɔn na di san ɛn dɛn kin rɛd ivin afta dɛn dɔn de na di san smɔl? Sɔntɛnde, dis kin apin to yɔŋ pikin dɛn bak. Wan tin we kin mek dis apin na wan sik we dɛn kɔl Xeroderma Pigmentosum , ɔ XP fɔ shɔt tɛm. Tide wi go jɔs tɔk bɔt wetin i bi, wetin mek i kin apin, ɛn aw wi go liv wit am.

Wetin dis (XP) min? Lɛ wi ɔndastand gud gud wan!

Fɔ tɔk am simpul wan, Xeroderma Pigmentosum (XP) na wan sik we nɔ kin apin so ɔltɛm . We yu yɛri di wɔd "jɛnɛtik," yu go mɔs tink bɔt sɔntin lɛk dis. Dat min se na sɔntin we wi gɛt frɔm wi mama ɛn papa, ɔ ɔl tu. Pipul wae gɛt dis sik kin gɛt bɔrku sɛnsitiv skin to ɔltra vayolɛt (UV) rayt frɔm di san. Fɔ tɔk di kɔrɛkt tin, i nɔ kin izi fɔ dɛn skin fɔ tek dɛn (UV) rayt ya.

Tipikli, di sayn dεm fכ dis (XP) kכndyushכn kin apia pan pat dεm na di bכdi we kin de pan di san bכku tεm. Fɔ ɛgzampul, na di fes, an, ɛn lip . Bɔku tɛm, dɛn sayn ya kin bigin fɔ sho we dɛn yɔŋ, dat na we dɛn smɔl . Imajin, ivin smɔl pikin kin de na di san fɔ jɔs sɔm minit, ɛn dɛn skin kin gɛt blista ɛn bɔn (blistering sunburns).

Na (XP) kansa? Dis na kwɛstyɔn we bɔku pipul dɛn gɛt!

Nɔ, XP nɔto kansa dairekt wan . Bɔt na di impɔtant pɔynt dis. Pɔsin we gɛt XP kin gɛt bɔku bɔku kansa na in skin pas ɔda pipul dɛn.

Pan ɔl we dis na smɔl stori we de mek pɔsin fred, i impɔtant fɔ no. Luk dɛn statystik ya:

• Pɔsin we gɛt XP kin gɛt lɛk 10,000 tɛm pas di avɛrej pɔsin .
• Dɔn bak, di risk fɔ gɛt melanoma, we na wan siriɔs kansa na di skin, kin pas lɛk 2,000 tɛm so .

Apat frɔm dɛn kansa ya na dɛn skin, sɔm stɔdi dɔn sho se pipul dɛn we gɛt XP kin gɛt ɔda kayn kansa. Fɔ ɛgzampul:

• Tכmכro dεm na di bren (Astrocytoma) , (Glioblastoma) .
• Brɔst kansa
• Kidni kansa
• Lukimiya
• Kansa na di lɔng
• Kansa na di pankrias
• Bɛlɛ kansa
• Testikul kansa
• Tayrɔyd kansa
• Kansa na di uterin

Nɔ mek yu fred wit dis list. Nɔto ɔl dɛn kansa ya go de pan ɛvri (XP) pasɛnt. Bɔt i impɔtant fɔ no bɔt di prɔblɛm dɛn we kin apin.

Aw dis sik kin kɔmɔn?

Xeroderma Pigmentosum na wan sik we nɔ kin apin so ɔltɛm . Dɛn se na wan pan ɛvri milyɔn pipul dɛn nɔmɔ na kɔntri dɛn lɛk Amɛrika ɛn Yurop gɛt dis sik (XP).

Bɔt, i kin apin mɔ na sɔm say dɛn na di wɔl. Fɔ ɛgzampul, na Jepan, dis sik kin afɛkt lɛk wan pan ɛvri 22,000 pipul dɛn. I nɔ kin bɔku bak na Nɔt Afrika ɛn di Midul Is. Pan ɔl we dɛn nɔ gɛt ɛni rayt data bɔt aw i bɔku na Sri Lanka, dɛn kin tek am se na sik we nɔ kin bɔku.

Wetin na di sayn dɛm fɔ (XP)? Mek wi brok dem down!

(XP) Di sayn dɛm kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin, bɔt i kin mɔs afɛkt di skin, di yay, ɛn di nervɔs sistɛm .

Di sayn dɛn we pɔsin kin si na di skin

Dis na de sayn dɛm wae dɛn kin si mɔr:

• Blistering sanburn: Ivin afta yu dɔn de na di san fɔ shɔt tɛm, di skin kin blista ɛn bɔn.
• Dray, tin skin (Xerosis): Di skin kin dray bad bad wan, ɛn i kin tan lɛk parchment pepa.
• Frɛkl (Lentigos) bifo dɛn rich 2 ia: Bɔku tɛm, yɔŋ pikin dɛn nɔ kin gɛt frɛk dis kwik.
• Pat dεm we di skin pigmεnt de inkrεs εn dכn (Poikiloderma): Sכm εria dεm kin bi brawn, εn כda wan dεm kin wayt.
• Fɔ mek yu skin tan (Atrophy).
• Rεd layn dεm na di skin we dεn kכz fכ di bכdi vεsul dεm we de wayd - Telangiectasia: dεn de sho lεk rεd layn dεm biכs sכm sכm bכdi vεsul dεm de si na di sכfa.

Apat frɔm dat, pipul dɛn we gɛt XP kin gɛt bɔku prɔblɛm dɛn na dɛn skin we dɛn kɔl actinic keratoses, we kin gɛt kansa .

Di sayn dɛn we pɔsin kin si na di yay

Bɔrku tɛm, pipul dɛm wae gɛt XP kin gɛt ay simptom bifo dɛn rich 10 ia :

• Dray yay.
• Aylid dεjεnεreshכn/atrofi.
• Inflameshɔn na yu kɔnia (Keratitis).
• di transparency nכ de na di כta layεr na yu yay - Kכnia opacification: dis min se di pat pan di yay we lεk miro de bi klawd.
• Layt sɛnsitiviti (Photophobia): I nɔ kin izi fɔ bia ivin smɔl layt.
• Di aylash dɛn we de lɔs.

As tɛm de go, dɛn sik ya kin mek pɔsin nɔ ebul fɔ si fayn, ɛn ivin blaynd . Pipul dɛn we gɛt XP kin gɛt ay kansa bak .

Nyurolɔjik simptom dɛm

XP kin afɛkt yu nervɔs sistɛm bak. Na lɛk wan kwata pan pipul dɛm wae gɛt XP go gɛt sɔm kayn sik wae gɛt fɔ du wit di nervɔs sistɛm. Sɔm ɛgzampul dɛn na:

• Disfagia - i nɔ kin izi fɔ swɛla.
• Lɔs fɔ di riflɛks dɛn.
• Pwεl mכsul kכntrכl (Ataxia) εn stiffness (Spasticity).
• Prɔgrɛsiv lɔs pan di skil dɛm fɔ tink (kɔgnitiv) skil dɛm.
• Prɔgrɛsiv yɛri lɔs we kin kam bikɔs ɔf di insay yes nerv dɛm we dɔn pwɛl.
• Smɔl ed saiz (Maykrosɛfali).
• Vokal kɔd paralayz.

Masta sabi bukman dɛn biliv se dɛn sik ya kin kam bikɔs di nerve cells na di bren de pwɛl.

Wetin na di rizin fɔ di fɔmɛshɔn fɔ (XP)?

As wi bin dɔn tɔk, Xeroderma Pigmentosum na wan sik we de mek pɔsin gɛt jɛnɛtiks . dis min se i de kכz fכ abnכmal chenj (mכtεshכn) dεm na di jin dεm na wi bכdi. Yu kin gɛt dɛn jɛnɛtik chenj ya frɔm yu mama, yu papa, ɔ ɔl tu. Fɔ tɔk am simpul wan, na bikɔs di jin dɛn we de ɛp wi skin fɔ mek di tin dɛn we dɔn pwɛl we UV rayt de mek i fayn, nɔ de.

Aw a go no if a gɛt (XP)?

Yu dɔktɔ kin sɔprayz se yu gɛt XP bay di sayn dɛm we yu gɛt. Fɔ mek dɛn no se dɛn gɛt di saspek, dɛn go du blɔd tɛst . dis bכdi tεst de chεk fכ di jin mכtεshכn dεm we de mek Xeroderma Pigmentosum.

Yu tink se kɔmplit mɛrɛsin de fɔ (XP)?

I sɔri fɔ no se naw, no mɛrɛsin nɔ de fɔ Xeroderma Pigmentosum. Bɔt yu dɔktɔ kin tɛl yu fɔ du difrɛn tritmɛnt dɛn fɔ ɛp fɔ ridyus di sayn dɛn ɛn fɔ mek yu layf izi:

• Ay drɔp: Dɛn kin gi ay drɔp we de rɔb fɔ mek di wayt na di yay nɔ inflamɛns.
• Ɛp fɔ yɛri: If pɔsin nɔ de yɛri fayn, dɛn kin gi pɔsin tin fɔ ɛp pɔsin fɔ yɛri. Insay sɔm kayn bad bad tin dɛn , dɛn kin ivin se dɛn fɔ put kɔklia implant .
• Ɔpreshɔn: If yu gɛt kansa na yu skin, yu go nid ɔpreshɔn fɔ pul am. Ɔ yu kin nid fɔ gɛt ɔpreshɔn fɔ trit sɔm ay kɔndishɔn dɛn lɛk we yu yay de drɔp (ptosis) ɔ prɔblɛm wit di wayt na yu yay. Sɔntɛnde sik dɛn we kin rili bad , i kin nid fɔ transplant kɔnia .
• Vitamin D supliment dɛn:Bɔku pipul dɛn kin gɛt vaytamɛn D frɔm di san ɛn it. Pipul wae gɛt XP nid fɔ avɔyd san layt ɔlmost, so dɛn nid fɔ tek vaytamɛn D sɔpɔtmɛnt.

Yu tink se dɛn kin ebul fɔ stɔp XP?

Bikɔs XP na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks, no we nɔ de fɔ mek i nɔ kam . If yu dɔktɔ tink se yu gɛt di jin we de mek yu gɛt XP, yu kin du yu jenɛtik tɛst .

Wan jenɛtik tɛst kin no if yu gɛt di jin muteshɔn. Wan jenɛtik kɔlnɔ go ɛksplen to yu di rizɔlt, di prɔblɛm dɛn we kin apin, ɛn di chans fɔ gɛt pikin we gɛt XP.

Wetin yu fɔ pe atɛnshɔn to we yu de liv wit (XP)?

If yu gɛt Xeroderma Pigmentosum, sɔm tin dɛn de we yu fɔ rili pe atɛnshɔn to fɔ mek yu kɔntinyu fɔ gɛt yu ɔl wɛlbɔdi. Dis na di tin dɛn we impɔtant pas ɔl:

• San protɛkshɔn: Dis na di impɔtant step fɔ manej XP. I impɔtant fɔ protɛkt yu skin frɔm UV rayt.
• Wear klos we go protɛkt yu frɔm di san . Dis min se yu fɔ wɛr lɔng sliv shit, lɔng pant, sɔks, ɛn hat.
• Wear sanglas we de blok UV .
• Yuz brayt-spɛktrum sanskrin wit SPF 35+ ɔ pas dat ɛvride. Ivin if i nɔ luk lɛk san, UV rayt kin stil rich tru di klawd.
• Di masta sabi bukman dɛn se yu fɔ yuz UV layt mita fɔ no usay yu envayrɔmɛnt de mɔs gɛt UV rayt ɛn avɔyd am. Sɔm layt dɛn we de insay yu os kin mek UV rayt bak, so no bɔt dat bak.

• Fɔ chɛk yu yay: Go to dɔktɔ we de mɛn yu yay fɔ mek dɛn chɛk yu yay ɔltɛm. I go chɛk fɔ tin dɛn lɛk di aylid we de drɔp ɛn di yay we de swel. Mek dɛn chɛk yu yay wan tɛm insay di ia, ɔ mɔ lɛk aw yu dɔktɔ se.

• Fɔ chɛk yu skin: Si dɔktɔ we de mɛn yu skin ɛvri 6 to 12 mɔnt, ɔ mɔ lɛk aw yu dɔktɔ se. Dɛn go chɛk fɔ sayn dɛm fɔ kansa ɔr mol dɛm we kin bi kansa. We yu de na di dɔktɔ in ɔfis, chɛk yu skin wan tɛm insay di mɔnt . If yu notis ɛni nyu spat ɔ lumps, go to dɔktɔ we de mɛn yu skin wantɛm wantɛm.

• Nyurolɔjik kia: Pipul dɛn we gɛt (XP) fɔ go to nyurolɔjis.Yu fɔ mit wit dɛn ɔltɛm fɔ chɛk dɛn riflɛs, yɛri, ɛn ɔda tin dɛn If di dɔktɔ notis ɛni chenj na dɛn wok ya, i go tɛl yu fɔ tek tritmɛnt fɔ kɔntrol ɔ slo di sik we de wɔs.

Mɛmba se ɔl dis na fɔ protɛkt yusɛf. If yu fala dɛn tin ya fayn, yu kin liv sakrifays layf ivin wit (XP).

Wetin yu kin se bɔt di layfspan fɔ pɔsin we gɛt (XP)?

Di layf we pɔsin we gɛt Xeroderma Pigmentosum kin liv kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Bɔrku tɛm, dɛn kin no se yu gɛt kansa na yu skin we dɛn yɔŋ, ɛn dis kin mek yu liv shɔt. Bɔt if yu tek tin dɛn fɔ mek di san nɔ pwɛl yu skin frɔm we yu yɔŋ, dat kin mek yu gɛt mɔ chans fɔ liv lɔng . So, i rili impɔtant fɔ fala di tin dɛn we wi dɔn tɔk bɔt fɔ mek wi nɔ gɛt prɔblɛm.

Kwɛstyɔn dɛn we yu fɔ aks yu dɔktɔ

If yu ɔ yu pikin gɛt Xeroderma Pigmentosum, ɔ if yu tink se yu gɛt am, yu kin aks yu dɔktɔ dɛn kwɛstyɔn ya:

• Wetin a go du fɔ mek a nɔ gɛt kansa na mi skin?
• Us kayn kansa skrinin fɔ du?
• Wetin na di fɔs sayn dɛm fɔ gɛt kansa na yu skin?
• Aw dis diagnosis go afɛkt di ɔda pipul dɛn na mi famili?
• A fɔ tink bɔt fɔ tɛst di jɛnɛtiks?
• Wetin na di chans fɔ mek a gɛt ɔda pikin wit (Xeroderma Pigmentosum)?

Fɔ dɔn, tin dɛn we wi fɔ mɛmba

Okay, so di sik we wi bin de tɔk bɔt (Xeroderma Pigmentosum - XP) na wan rare, jenɛtik kɔndishɔn. di men tin we dis de sho na we i de fil bad bad wan to (UV) rayt. Bɔrku pipul dɛn kin gɛt prɔblɛm wit dɛn yay ɛn nervɔs sistɛm bak. If yu gɛt (XP), yu fɔ avɔyd bɔku san layt, dat na (UV) rayt, as yu ebul . Fɔ protɛkt yu skin frɔm di san ɛn fɔ gɛt skin kansa skrinin ɔltɛm na yu bɛst chans fɔ gɛt wɛlbɔdi.

A op se dis infɔmeshɔn go ɛp yu. If yu gɛt ɛni kwɛstyɔn, nɔ shek fɔ aks yu dɔktɔ. Dɛn go ɛp yu.

` Xeroderma Pigmentosum, XP, skin sik, jεnεtik sik, san sεnsitiviti, skin kεnsar, UV rayt