Yu no bɔt PCD? (Primary Ciliary Dyskinesia) Lɛ wi tɔk bɔt dis sik we nɔ kin apin so ɔltɛm!

Yu dɔn ɛva yɛri bɔt wan sik we dɛn kɔl ‘Primary Ciliary Dyskinesia’ ɔ `(Primary Ciliary Dyskinesia - PCD)`? Pan ɔl we di nem kin tan lɛk se i strenj smɔl, dis na tin we nɔ kin apin so ɔltɛm, bɔt i rili impɔtant we kin afɛkt wi respiratory system ɛn ɔda tin dɛn we de apin na di bɔdi. Bɔku tɛm, na sɔntin we de de we dɛn bɔn am. So, tide wi go tɔk bɔt dis PCD insay wan simpul we we yu go ɔndastand.

Wetin na praymari ciliary dyskinesia (PCD)?

Fɔ tɔk am simpul wan, PCD na wan sik we kin apin we di smɔl smɔl tin dɛn we tan lɛk ia na wi bɔdi we dɛn kɔl cilia nɔ de wok fayn . Dɛn cilia ya so smɔl dat wi yay nɔ de si dɛn. Imajin se dɛn cilia ya de wok lɛk smɔl smɔl brum dɛn na wi respiratory tract, dat na, na say dɛn lɛk di nos, trot, ɛn lɔng.

So wetin dɛn cilia ya de du?

dis sכm sכm tin dεm we lεk ia we dεn kכl cilia nכ de nכmכ na wi rεspiretכri sistεm, bכt na sכm כda ples dεm bak. Dɛn men wok na fɔ swip tin dɛn we wi nɔ want lɛk jem ɛn dɔst we de kam insay wi bɔdi, ɛn bak di mכkus we de gɛda na di bɔdi . Dɛn kin du dis bay we dɛn de muf lɛk wef. nכto dat nכmכ, we di pikin de divεlכp na di bεlε, dεn cilia dεm ya de εp bak fכ di pikin in כgan dεm fכ de na di rayt ples dεm.

So, wetin kin apin to pɔsin we gɛt PCD na dat dɛn cilia ya nɔ de wok fayn. Dat min se:

• Sɔntɛm dis cilia saiz nɔ rayt .
• Dɛn shep kin bi sɔntin we nɔ kɔmɔn .
• Sɔntɛm di cilia go dɔnawe .
• Ɔ, dɛn kin muv rawnd lɛk krayzi, we nɔ gɛt ɛni kɔnekshɔn to dɛnsɛf .
• Ɔ i nɔ kin muf atɔl .

Aw wi kin sik frɔm cilia we nɔ de wok fayn?

we dεn cilia ya nכ de wok fayn, difrεn hεlth prכblεm dεm kin apin. Sɔm kin bigin we dɛn bɔn dɛn, ɛn ɔda wan dɛn kin apin leta.

• di כgan posishכn we nכ nכmal: Imajin, כgan dεm lεk wi at, lכng, splin, εn כda say dεm de na di כda say insted fכ de na di rayt say. Sɔntɛnde, wetin fɔ de na di rayt say kin de na di lɛft say. Wi de kɔl dis ``Situs Inversus`` . Sɔntɛnde, dɛn kin tɔn di ɔgan dɛn ɔlsay na di rɔng say. dis kin apin bak if dεn cilia dεm de nכ de wok fayn fayn wan.
• Krεse, siriכs rεspiretכri sik: Dis na di men prכblεm fכ PCD. we di cilia dεm nכ ebul fכ kכl mכkus, di mכkus de kכmכt na di lכng dεm εn di aywe dεm. Dis kin mek pɔsin kin kɔf bɔku tɛm, in chɛst kin rɔtin, ɛn i kin gɛt siriɔs infɛkshɔn . Dis kin pwɛl di lɔng dɛn bak.
• Fεtiliti ishu: Bɔku tɛm, i nɔ kin izi fɔ man dɛn we gɛt PCD fɔ bɔn pikin, we min se dɛn nɔ kin ebul fɔ bɔn pikin . uman dεm kin gεt siriכs kכmplikεshכn dεm bak we dεn bεlε, lεk εktopik bεlε (we di εmbrayo de implant ausayd di uterus).I pɔsibul.

Wetin kin mek pɔsin gɛt PCD?

Dis na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks . Dat min se na sɔm chenj ɔ chenj dɛn we de apin na di jin dɛn we de pas frɔm mama ɔ papa to pikin. Bɔku kayn tin dɛn de we kin mek pɔsin gɛt dis sik.

Wetin na di sayn dɛm fɔ praymari ciliary dyskinesia?

Bɔku tɛm, pipul dɛn kin si di sayn dɛn we dɛn kin bɔn pikin, ɛn i kin go ɔp smɔl smɔl as tɛm de go.

Di sayn dɛm fɔ PCD we yu kin si we dɛn bɔn am:

• distres fכ di pikin : di pikin kin gεt difrεnt fכ brith wantεm afta i bכn.
• Nasal congestion : Yu nos kin fil se yu de blok ɔltɛm.
• Wet kɔf we nɔ de dɔn : Kɔf we de mek yu kɔf kin kɔntinyu fɔ de.
• abnכmal posishכn fכ di כgan dεm (hεterotaxia) : As wi bin dכn tכk, di כgan dεm kin de na di rכng ples, sכm כgan dεm kin mis, כ dεn nכ kin divεlכp fayn. Situs inversus na ɔda kayn kɔndishɔn.
• Sɔntɛnde, at sik we dɛn kin bɔn wit .
• Lɔs fɔ infleshɔn na di lɔng (atelectasis) .
• di tin dεm we de gro lεk sist na di כgan dεm lεk di kidni dεm εn di pankrias.
• Antibodi dεfisiεns (humoral (antibody) deficiency), we kin mek di risk fכ infεkshכn na di lכng εn sayn dεm go bכku.

Di PCD simptom dɛm we de kɔntinyu fɔ de:

As tɛm de go, yu kin notis sɔm sayn dɛn lɛk dis:

• Kɔf we nɔ de dɔn : Na kɔf we nɔ de dɔn.
• Chronic sinusitis : Na di sayn prɔblɛm dɛn we kin apin bɔku tɛm.
• Iya infεkshכn : I kin infεkshכn na yu yes bכku tεm, wata kin kכmכt na di yes.
• Mɔkus ɛn swɛt we pasmak .
• Infertility (especially fɔ man dɛn).
• Polip dɛn we de na di nos .
• Bɔku tɛm we pɔsin kin gɛt siriɔs nyumonia .
• Infεkshכn dεm we de fכm כp rεspiretכri כltεm .
• Sɔntɛnde, wata kin gɛda na di bren (haydrosɛfalɔs).

Aw dɛn kin no bɔt praymari ciliary dyskinesia (PCD)?

Fɔ tru, fɔ no bɔt dis kin kɔmplikt smɔl. I nɔ pɔsibul fɔ se fɔ tru wit jɔs wan tɛst se na PCD. Dɔktɔ dɛn kin kam fɔ no bɔt dis afta dɛn dɔn du sɔm difrɛn tɛst dɛn.

• Mɛdikal ɛgzamin ɛn mɛdikal istri: Fɔs, di dɔktɔ go aks yu bɔt yu sik ɛn if ɛnibɔdi na yu famili dɔn gɛt dis kayn sik.
• Cilia biopsy: Dɛn kin tek wan smɔl pat pan di tisu frɔm di nos ɔ di lɔng dɛn ɛn chɛk am ɔnda maykroskɔp. Dis kin mek wi si di shep, saiz, ɛn muvmɛnt fɔ di cilia.
• Tɛst fɔ di jɛnɛtiks:dis tεst de luk fכ jεnεtik mכtεshכn dεm we de asai fכ PCD. Bɔt i nɔ go pɔsibul fɔ fɛn dɛn jɛnɛtik muteshon ya pan ɔlman we gɛt PCD.

Apat frɔm dis, dɛn kin du ɔda tɛst dɛn if dɛn tink se gɛt PCD:

• Naytric oxide measurement we wi de blo: Na spɛshal tin de mɛzhɔ di lɛvɛl we wan gas we dɛn kɔl nitric oxide de na di briz we wi de pul. Pipul wae gɛt PCD kin gɛt abnɔmal lɔw lɛvɛl pan dis gas.
• Pulmonary function tests: Dɛn tɛst ya de chɛk aw yu lɔng dɛn de wok fayn ɛn if yu gɛt ɛni prɔblɛm fɔ blo.
• Vidio maykroskɔpi: Dɛn kin tek wan sampul pan di cilia ɛn si am tru maykroskɔp we gɛt ay pawa vidio kamɛra. dis de mek dεn ebul fכ si di cilia dεm sloslo, we de alaw fכ stכdi prεsis fכ dεn wok.

Aw dɛn kin trit praymari ciliary dyskinesia (PCD)?

Bɔt i sɔri fɔ no se, no mɛrɛsin nɔ de fɔ PCD yet . Bɔt bɔku tritmɛnt dɛn de we kin ɛp fɔ kɔntrol di sik, fɔ ridyus di sayn dɛm, ɛn mek layf izi smɔl.

di men gol na fכ pul mכkus εn wata we de kכmכt na di lכng . Dɛn kin du dis bay we dɛn de du tin dɛn lɛk:

• Airway clearance: Wan spɛshal mashin de ɛp fɔ lus ɛn pul di mucus. Spɛshal kɔf tɛknik dɛn de bak we de ɛp fɔ klin di mכkus.
• Chɛst fizik tritmɛnt: Sɔm pipul dɛn kin yuz sɔntin we tan lɛk vest we kin tap di chɛst jisnɔ. Dis kin ɛp fɔ mek di mucus lɔs ɛn ɛp am fɔ kɔmɔt.
• di ia tכb dεm: If yu gεt infεkshכn na yu yes bכku tεm, dεn kin put sכm sכm tכb dεm na di ia dכm fכ drεn di wata we de kכmכt na di midul ia.

Apat frɔm dat, dɛn kin gi mɛrɛsin dɛn lɛk dis fɔ kɔntrol infɛkshɔn ɛn inflamɛns:

• Antibayɔtik: Dɛn kin gi dɛn tin ya fɔ kɔntrol baktriyal infɛkshɔn na di bɔdi. Sɔntɛnde, i kin nid fɔ gi antibayɔtik insay di bɛlɛ.
• Azithromycin: Dis na mɛrɛsin wae de ɛp fɔ ridyus inflamɛns na di lɔng, ɛn sɔmtɛm dɛn kin tek am ɛvride.
• Bronchodilators: Na mɛrɛsin dɛn lɛk albuterol. Dɛn tin ya kin mek di say dɛn we di briz de blo wayd smɔl, ɛn dis kin mek i izi fɔ mek pɔsin blo.
• Kɔtikosterɔyd: Dɛn wan ya kin kɔntrol di kemikal dɛn we de apin na di bɔdi ɛn ridyus di inflamɛns.
• Mucus thinners: Dɛn mɛrɛsin ya we yu kin inhal kin ɛp fɔ mek di mucus na di aywe dɛn tan ɛn mek i izi fɔ pul am.

A go nid mɔ PCD tritmɛnt?

Sɔntɛnde, lɛk aw wi bin dɔn tɔk, if di ɔgan dɛn de na di rɔng ples, dɛn kin nid fɔ du ɔpreshɔn fɔ kɔrɛkt dɛn.. Dɛn kin du dɛn ɔpreshɔn ya jɔs afta dɛn bɔn di pikin. Dɔn bak, dɛn kin nid fɔ du ɔda ɔpreshɔn leta na layf fɔ mek dɛn nɔ gɛt ɔ trit prɔblɛm dɛn we kin apin.

Yu kin ebul fɔ protɛkt praymari ciliary dyskinesia (PCD)?

Bikɔs dis na tin we pɔsin kin gɛt frɔm in bɔdi, rili natin nɔ de we wi go du fɔ mek i nɔ apin . Bɔt if pɔsin we de nia yu fambul gɛt PCD ɛn yu de tink fɔ bigin famili, i go fayn fɔ tink bɔt fɔ tɛst yu jɛnɛtiks ɛn fɔ advays yu jɛnɛtiks . Dɛn savis ya kin ɛp yu fɔ no aw yu ɔ yu pikin go gɛt dis sik.

Wetin na di layf we pipul dɛn we gɛt PCD kin liv?

Bɔku pipul dɛn kin liv lɔng, bɔku tɛm te dɛn ol . Di tin we impɔtant pas ɔl na fɔ gɛt di rayt tritmɛnt ɛn kia fɔ yusɛf.

Wetin na di prɔgnosis fɔ pipul dɛm wae gɛt PCD?

Dis kin rili difrɛn frɔm wan pɔsin to ɔda pɔsin . Sɔm pipul dɛn kin sik frɔm di de we dɛn bɔn dɛn ɛn dɛn kin kɔntinyu fɔ de so ɔl dɛn layf. Ɔda pipul dɛn kin gɛt wɛlbɔdi we dɛn de fri tɛm ɛn afta dat dɛn kin sik bad bad wan sɔntɛnde. So, e fayn fɔ tɔk to yu dɔktɔ bɔt yu sik ɛn fala in advays.

Wetin na di prɔblɛm dɛn we kin apin we pɔsin gɛt PCD?

Bikɔs infɛkshɔn kin apin bɔku tɛm, i kin pwɛl di tisu dɛn na di ɔgan dɛn, mek yu gɛt skata, ɛn i kin mek yu gɛt difrɛn prɔblɛm dɛn. Fɔ ɛgzampul:

• I nɔ de yɛri fayn .
• dilayshכn εn damej pan di aywe dεm (bronchiectasis) : Dis kin mek di lכng dεm dεm mכr damej.
• Respiratory failure : Dis kכndyushכn kin apin pan di kεys dεm we rili siriכs.

Wetin na di impɔtant tin dɛm fɔ no we yu de liv wit PCD?

PCD na wan sik we nɔ de mɛn. So, we yu de liv wit am, yu kin mek yu layf izi smɔl ɛn du dɛn tin ya fɔ mek yu gɛt wɛlbɔdi:

• Ɛksesaiz: We yu de du mɔdaret fyzikal aktiviti, yu de blo dip dip wan. Dis kin ɛp fɔ mek di mכkus na yu lכng dεm lכs εn i de εp yu fכ brith izi wan. I de mek yu ɛnaji bɔku bak.
• Sɔpɔt pan aw pɔrsin de fil: Fɔ liv wit sik lɛk dis kin tranga fɔ fil sɔmtɛm. Sɔntɛm prɔblɛm dɛn kin de. So, fɔ gɛt sɔpɔt frɔm pɔrsin wae sabi bɔt mɛntɛl hεlth, lɛk pɔrsin wae de gi yu advays, kin ɛp yu fɔ ridyus de strɛs wae yu de fil.
• Fɔ de wach yu dɔktɔ ɔltɛm: Yu go nid fɔ go to yu dɔktɔ ɔltɛm fɔ si aw yu tritmɛnt de wok fayn, if yu sik de wɔs, ɔ if nyu prɔblɛm dɛn de kam. Yu kin nid bak fɔ du tɛst fɔ no aw yu pulmonari de wok ɔltɛm ɔ fɔ tek ɛkstrem rayt na yu chɛst.

Di tin we impɔtant pas ɔl na fɔ nɔ panik wans yu dɔn no se yu gɛt PCD, bɔt fɔ fala yu dɔktɔ in instrɔkshɔn dɛn ɛksaktɔli ɛn tek kia ɔf yusɛf.

Mɛsej we dɛn kin kɛr go na os

Praymari Siliary Dyskinesia (PCD) na wan rare, jεnεtik dizכrd we de afekt di rεspiretכri sistεm εn כgan sistεm dεm fכs. Di sayn dɛm kin wɔs as tɛm de go, ɛn prɔblɛm lɛk wae yu nɔr de blo fayn kin kam.

Bɔt pan ɔl we no mɛrɛsin nɔ de fɔ dis, tritmɛnt dɛn de we go ɛp fɔ kɔntrol di sik dɛn ɛn ridyus di risk fɔ gɛt di sik . Tin dɛm lɛk fɔ klia di say dɛm we di briz de blo ɛn mɛrɛsin kin gi yu bɔku rilif. I impɔtant bak fɔ fɛn saykilɔjik sɔpɔt fɔ ɛp fɔ ridyus di strɛs we pɔsin kin gɛt we i de liv wit sik we nɔ de mɛn lɛk dis. Nɔto yu wan de, ɛn dɔktɔ ɛn ɔda pipul dɛn de we go ɛp yu.

` PCD, praymari ciliary dyskinesia, cilia, respiratory system, jenetik dizayd, krεse kכf, כgan plesmεnt, , jεnεtik dizכrd, krεse kכf, כgan plesmεnt, rεspiretכri sik