Yu gɛt prɔblɛm wit yu skin, yu ia, ɔ yu tit? Lɛ wi tɔk bɔt Ectodermal Dysplasia!

Yu dɔn ɛva notis se sɔm yɔŋ pikin dɛn gɛt smɔl ia, ɔ dɛn tit kin kam insay strenj shep, ɔ dɛn nɔ kin swet atɔl? Wen wi si tin laik dis, wi get smol kweshon, "Wetin mek dis de hapun?" Sɔntɛnde, di rizin fɔ dis kin bi wan sik we nɔ kin apin so ɔltɛm we dɛn kɔl Ectodermal Dysplasia , we wi go tɔk bɔt tide. Nɔ wɔri, wi go tɔk bɔt dis ditayli.

So, wetin na Ectodermal Dysplasia?

Fɔ tɔk am simpul wan, dis na wan sik we nɔ kin apin bikɔs ɔf in jɛnɛtiks . Na wan kכndyushכn we de apin bikoz fכ chenj dεm na wi jin dεm. I kin mɔna yu ia, yu tit, yu nel, ɛn yu swet gland dɛn . Sɔntɛnde, i kin afɛkt yu yay, yes, bɔdi, ɔ yu sɛntral nervɔs sistɛm bak. כl dεn pat dεm ya na wi bכdi de fכm frכm di כtamost layεr fכ sεl dεm we dεn k כl εktodam we wi de divεlכp insay di bכdi lεk pikin. so dis kכndyushכn kin apin we prכblεm de wit di divεlכpmεnt fכ dis εktodam.

Dis na wan sik we dɛn bɔn wit , we min se dɛn bɔn pɔsin wit am. Bɔt nɔto ɔlman go notis am jɔs afta dɛn bɔn am. Sɔntɛnde, mama ɛn papa dɛn kin notis di sik dɛn insay sɔm dez afta dɛn bɔn di pikin. Ɔda tɛm, di sayn dɛn nɔ kin apin fɔ lɔng lɔng tɛm.

Difrɛn kayn dis sik de?

Yɛs, sɔm pipul dɛn we de stɔdi bɔt dis dɔn rili no pas 180 kayn Ectodermal Dysplasia . Ɛni kayn sik gɛt in yon sɛt fɔ sayn dɛn. Tink bɔt am lɛk se pipul dɛn na di sem famili difrɛn frɔm dɛnsɛf. Dɛn kayn pipul ya nɔ de pan dɛn. Lɛ wi luk sɔm ɛgzampul dɛn, nɔto so?

• Hypohydrotic Ectodermal Dysplasia (HED): Dis na di kayn we we dɛn kin gɛt mɔ. Dɛn pipul ya nɔ kin gɛt bɛtɛ swet gland. So, dɛn nɔ de swet lɛk ɔda pipul dɛn. Dɛn kin gɛt bak dɛn ia kin lɔs, dɛn kin gɛt smɔl tit ɔ dɛn kin lɔs, ɛn dɛn kin gɛt sik dɛn na dɛn skin fɔ lɔng tɛm lɛk ɛkzema .
• Anhidrotic Ectodermal Dysplasia with Immune Deficiency (EDA-ID): Dis kayn tin kin gɛt siriɔs prɔblɛm wit di imyun sistɛm. Fɔ ɛgzampul, di antibodi dɛn kin ridyus ɛn di infɛkshɔn dɛn we nɔ de dɔn kin bɔku.
• Hay-Wells syndrome: Dɛn pipul ya kin gɛt sɔm sayn dɛm lɛk we dɛn ia kin lɔs, dɛn skel kin gɛt infɛkshɔn, dɛn nel kin brok, dɛn tut kin lɔs, dɛn yaylid kin tan lɛk se dɛn dɔn stɔp togɛda, ɛn dɛn lip ɛn/ɔ dɛn palata kin skata .
• Hidrotic Ectodermal Dysplasia (HED2) ɔ Clouston syndrome: Dis kin mɔs afɛkt di grow we di ia, skin, ɛn nel dɛn de gro.
• Witkop syndrome: Insay dis kɔndishɔn, di nel dɛn kin brok ɛn brok izi wan. Tit dɛn kin lɔs bak.(hypodontia) di tit dεm kin shep lεk kכn εn dεn kin spεs fa fawe.

Naw yu dɔn ɔndastand se dis nɔto wan sik, bɔt na bɔku difrɛn prɔblɛm dɛn we de kam togɛda.

Wetin na di sayn dɛm fɔ Ectodermal Dysplasia?

As wi bin dɔn tɔk, ɛvri kayn Ectodermal Dysplasia gɛt in yon spɛshal sayn dɛm. Bɔt, in jɛnɛral, pɔrsin wae gɛt dis sik go gɛt at le wan pan dɛn tin ya ɔr nɔrmal tin ya:

• Ay: Dray yay, di yay we de smɔl, prɔblɛm wit di fɔs pat na di yay, fɔ ɛgzampul , di kɔnia we de rɔtin bak .
• di rεt fכ gro: di rεt fכ di pikin dεm we gεt dis kכndyushכn de gro slo pas aw dεn bin de εkspεkt fכ dεn ej.
• I: I de tan lɛk, i kin brok izi wan, ɔ i kin gro sloslo. Sɔntɛnde, i kin gɛt smɔl ia.
• di limb dεm: di shep fכ di finga dεm כ di fut dεm de chenj, sכm finga dεm kin mis, כ di finga dεm kin wεb tכgeda (webd finga dεm כ fut dεm) .
• Mɔt: Klɛf lip ɛn/ɔ palata , dɛnt prɔblɛm. Fɔ ɛgzampul, tit we kruk, tit we nɔ de, ɔ tit we nɔ shep. Sɔntɛnde, di tit dɛn kin tan lɛk wed.
• Nɛl: Tin dɛn lɛk we di finga nel ɔ fut nel nɔ de, we di nel tik, we de tan, ɔ we de strek.
• Skin: Di skin kin gɛt rash ɛn i kin dray.
• Swet gland: Dɛn nɔ gɛt bɛtɛ swet gland, so dɛn nɔ kin swet pas ɔda pipul dɛn. Dɛn kɔl dis Hypohydrotic Ectodermal Dysplasia (HED) . As yu no, swet na im de kol wi bodi wen dem hot. So we wi nɔ de swet smɔl, ɔ wi nɔ de swet atɔl, wi bɔdi kin wam pasmak .
• di riprodaktiv εn urinary sistεm: We i nכ ebul fכ ɛmti di blad kכmplit wan de mek di risk fכ kכndyushכn dεm we de afekt di jεnital כ urinary sistεm, lεk haydronefrכsis , maykropenis , כ di tεstikul dεm we nכ dכn dכn . I pɔsibul bak fɔ bɔn pikin we nɔ gɛt wan ɔ ɔl tu di kidni.

Di impɔtant tin na dat nɔto ɔlman we gɛt dɛn sik ya gɛt Ectodermal Dysplasia . If yu tink se yu kin gɛt dɛn sik ya, yu dɔktɔ kin kɔnfirm am wit jenɛtik tɛst .

Wetin mek dis tin kin apin? Wetin na di rizin dɛn?

Di men tin we kin mek pɔsin gɛt Ectodermal Dysplasia naDi difrɛns dɛn we di jin dɛn kin chenj. Dis min se chenj de na di jin dɛm we de kip infɔmeshɔn na wi bɔdi. di kayn εktodamal displasia we yu de gεt de dipכnt pan us jin dεm gεt dεn chenj dεm ya, εn wetin na dεn chenj dεm.

Bɔku tɛm dis sik kin pas frɔm wan jɛnɛreshɔn to ɔda jɛnɛreshɔn . Dis min se if pɔsin na di famili gɛt am, chans de fɔ mek di jɛnɛreshɔn dɛn we gɛt fɔ kam bak go gɛt am. Bɔt, na smɔl tɛm nɔmɔ, i kin divɛlɔp as nyu jɛnɛtik muteshon, ivin if nɔbɔdi na di famili nɔ bin dɔn gɛt dis sik bifo.

Aw yu kin no bɔt dis?

We yu tɛl dɔktɔ se yu ɔ yu pikin gɛt dɛn sik ya, i go fɔs du in bɔdi ɛgzam . Speshali, i go luk fɔ abnɔmal tin dɛn na yu ia, nel, tit, ɛn swet gland dɛn.

Dipen pan yu sayn dɛm, yu kin gɛt imej tɛst bak lɛk ɛkstrem rayt ɔ CT skan .

If yu dɔktɔ sɔprayz se Ectodermal Dysplasia , i go mɔs ɔda fɔ mek dɛn du di jenɛtik tɛst . Dɛn tɛst ya kin no di chenj dɛn we de apin na yu jin dɛn. Dɛn kin tɛl yu bak kwik kwik wan if yu gɛt Ectodermal Dysplasia ɛn if na so, us kayn.

Wetin na di tritmɛnt dɛn?

Di tritmɛnt fɔ dis de dipen pan di kayn Ectodermal Dysplasia we yu gɛt ɛn aw yu sik dɛn kin tranga. No mɛrɛsin nɔ de fɔ dis sik. Bɔt sɔm tritmɛnt dɛn de wae kin ɛp yu fɔ kɔntrol yu sik ɛn liv nɔrmal layf.

Dɛn tritmɛnt ya kin mɔs adrɛs di sayn dɛm wae kin kam:

• Fɔ mek yu bɔdi kol: If yu nɔ swet, i kin at fɔ mek yu bɔdi kol. So fɔ mek yu nɔ gɛt ɔt ɛn yu nɔ taya wit ɔt , drink bɔku wata . Yu kin yuz bak vest dɛn we de mek yu kol .
• Ɔpreshɔn fɔ dɛn tit ɛn ɔral: Dɛn kin yuz dɛnt implant , brij, ɔ dɛnt fɔ chenj di tit dɛn we nɔ de. Dɛn kin yuz dɛnt bonding , vinɛs, ɔ krawn bak fɔ fiks smɔl tit dɛn we nɔ shep fayn.
• Tritmɛnt fɔ di ia we de lɔs: Mɛrɛsin dɛn de lɛk Minoxidil (Rogaine®) fɔ mek di ia gro.
• Moisturizer fɔ di skin: I rili impɔtant fɔ yuz ɔntmɛnt, krim, ɛn loshan ɔltɛm fɔ mek di skin nɔ dray ɛn nɔ pul di skin .

Displasia we de na di ɛktodɛmBikɔs i kin afɛkt difrɛn pat dɛn na di bɔdi, yu mɛdikal tim kin gɛt difrɛn spɛshal pipul dɛn lɛk dɛntist, dɔktɔ dɛn we de mɛn dɛn bɔdi, ɛn pipul dɛn we sabi bɔt dɛn jɛnɛtiks.

Bebi dεm we dεn bכn wit siriכs abnכmaliti fכ stat spεshal tritmεnt kwik kwik wan. Yu dɔktɔ go tɛl yu wetin fɔ ɛkspɛkt bay di tin we de apin to yu.

Aw e tan lɛk fɔ liv wit dis sik? (Autluk) .

If dɛn no dis sik kwik kwik wan ɛn trit am fayn, bɔku tɛm i pɔsibul fɔ liv gud layf . Bɔrku pipul dɛm wae gɛt Ectodermal Dysplasia de liv nɔrmal layfspan.

As wi bin dɔn tɔk bifo tɛm, dis nɔ go ebul fɔ mɛn ɔltogɛda. Bɔt wit tritmɛnt, dɛn kin ebul fɔ kɔntrol di sayn dɛn fayn fayn wan . So natin nɔ de fɔ fred.

Tin dɛm fɔ no if yu pikin gɛt dis sik

Dipen pan yu pikin in sik ɛn kɔndishɔn, dɛn kin nid sɔm difrɛn tritmɛnt dɛn. Di ɔda ɛn di tɛm we dɛn go gi dɛn tritmɛnt ya go dipen pan di kayn Ectodermal Dysplasia we yu pikin gɛt ɛn aw dɛn siriɔs. Yu dɔktɔ go wok wit yu fɔ mek wan tritmɛnt plan we go fayn fɔ yu pikin.

Na dis kayn tɛm, i nɔmal fɔ mek una as mama ɛn papa gɛt bɔku kwɛstyɔn dɛn. Tɔk bɔt ɔl dɛn tin ya wit di dɔktɔ ɛn sɔlv dɛn.

Yu tink se dɛn go ebul fɔ stɔp dis?

Bɔt i sɔri fɔ no se dɛn nɔ go ebul fɔ stɔp dis sik. Na bikɔs ɔf di chenj dɛn we wi gɛt na di jɛnɛtiks we wi nɔ ebul fɔ kɔntrol. If yu ɔ yu pikin gɛt Ectodermal Dysplasia , nɔto bikɔs ɔf ɛnitin we yu du ɔ nɔ du. Nɔ wɔri bɔt am.

If yu gɛt dis sik ɛn yu de plan fɔ gɛt famili, tink bɔt fɔ gɛt kɔyl fɔ yu jɛnɛtiks . Wan pɔsin we de advays yu bɔt yu jɛnɛtiks kin ɛp yu fɔ ɔndastand yu chans fɔ gɛt pikin we gɛt wan sik we de mek yu gɛt jɛnɛtiks.

Ustɛm yu fɔ go to dɔktɔ?

If yu ɔ yu pikin gɛt ɛni sayn we yu tink se gɛt fɔ du wit Ectodermal Dysplasia , tɔk to yu dɔktɔ. Fɔ ɛgzampul:

• Tut kin rɔtin ɔ yu tut kin lɔs
• Finga dɛn we gɛt wɛb
• Di skin kin dray ɔ rɔsh bɔku tɛm
• Abnɔmal tin dɛn na di yay ɔ yes

If yu si tin dɛn lɛk dis, go to dɔktɔ ɛn nɔ de te.

Us kwɛstyɔn dɛn yu fɔ aks yu dɔktɔ?

If yu ɔ yu pikin gɛt Ectodermal Dysplasia , yu kin aks yu dɔktɔ kwɛstyɔn dɛn lɛk:

• Us kayn ectodermal dysplasia mi/mi pikin gɛt?
• Us tritmɛnt opshɔn dɛn a gɛt?
• Aw dis tin go afɛkt mi/mi pikin in layf?
• Us prɔblɛm dɛn a fɔ wach fɔ?
• Aw ɔltɛm a fɔ go to dɔktɔ?
• Sɔpɔt grup dɛn de we de ɛp pipul dɛn wit dɛn kayn tin ya?

Fɔ no se yu ɔ yu pikin gɛt Ectodermal Dysplasia kin tranga smɔl. Test ɛn bɔku dɔktɔ dɛn go de fɔ si. Bɔt wans yu gɛt diagnosis , dɛn go ɛp yu fɔ ɔndastand aw yu sik dɛn gɛt fɔ du wit dɛnsɛf, aw fɔ mɛn dɛn, ɛn wetin fɔ ɛkspɛkt fɔ go bifo.

Nɔ wɔri, if yu gɛt di rayt tritmɛnt, yu kin ebul fɔ mɛn di sik we dɛn kɔl ectodermal dysplasia . I kin tek sɔm tɛm ɛn peshɛnt fɔ fɛn wetin go wok fɔ yu. Mɛmba se nɔto yu wangren de. We yu tɔk to ɔda pipul dɛn we de go tru di sem tin, dat kin mek yu gɛt bɔku trɛnk. Aks yu dɔktɔ bɔt sɔpɔt grup ɛn risɔs.

Mɛsej we dɛn kin kɛr go na os

Okay, so lɛ wi rivyu di impɔtant pɔynt dɛm we wi tɔk bɔt tide bɔt Ectodermal Dysplasia .

• Dis na sik we nɔ kin bɔku we pɔsin kin gɛt we i kam pan jɛnɛtiks .
• I kin mɔna di ia, di tit, di nel, ɛn di swet gland dɛn .
• I pas 180 kayn dɛn, so de sayn dɛn kin difrɛn .
• Jɛnɛtik tɛst na di wangren we fɔ no am kɔrɛkt wan.
• Pan ɔl we dɛn nɔ ebul fɔ mɛn di sik kɔmplit wan, tritmɛnt dɛn de fɔ kɔntrol di sik dɛn .
• If dɛn no di sik kwik kwik wan ɛn trit dɛn fayn, bɔku pipul dɛn kin liv nɔmal layf .
• Nɔto yu wan de, yu kin gɛt ɛp frɔm sɔpɔt grup dɛn .

So, if yu ɔr pɔrsin wae yu sabi gɛt dɛn sik ya, nɔr frayd fɔ go to dɔktɔ ɛn gɛt advays. Aw fɔ no na di fɔs tin we yu fɔ du.

` Ectodermal dysplasia, jεnεtik sik, skin sik, dental prכblεm, ia prכblεm, swet gland dεm, pikin dεm hεlth