Wetin na Sistik Faybrosis? Lɛ wi ɔndastand am simpul wan!

Yu go mɔs dɔn yɛri se dɛn bɔn sɔm pipul dɛn wit wan sik we dɛn kin gɛt frɔm dɛn jɛnɛtiks, nɔto so? Sistik Faybrosis (CF) na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks. Bɔku pipul dɛn kin tink se dis na sik we kin jɔs afɛkt di lכng, bikɔs i nɔ kin izi fɔ blo ɛn di lכng infεkshכn kin kam wit dis sik. Bɔt di stori rili kɔmplikt smɔl pas dat. Lɛ wi tek wan luk pan wetin i bi.

Wetin rili na sistik fibrosis (CF)?

Fɔ tɔk am simpul wan, sistik faybrosis (CF) na wan sik we de mek wi gɛt bɔku bɔku tik tik ɛn stika mכkus insay sɔm ɔgan dɛn na wi bɔdi. Dis tik tik mכkus kin pwεl dεn כgan dεm de εn i kin mek dεn nכ wok fayn.

Nɔmal wan, di mכkus na wi lכng εn nos kin rכn sכmtεm εn tכn. I kin mek dɛn say dɛn de wet ɛn i kin trap dɔti ɛn dɔti. Bɔt pan pipul dɛn we gɛt CF, wan jɛnɛtik muteshɔn kin chenj di we aw dis mכkus de mek. wan protin we de rispansabl fכ dis de mis כ i nכ de wok fayn. dis kin mek di sכlt dεm we de mek di mכkus tכn kin trכp insay di sεl dεm, we kin mek di mכkus rili tik εn stika.

Pan ɔl we bɔku pipul dɛn kin tink se na lɔng sik, CF gɛt in nem bikɔs i kin mek sist ɛn skata (fibrosis) na di pankrias. dis damej, wit di tik we di layn de tik, kin blok di dakt dεm we de rilis di dijestiv εnzym dεm we de εp fכ digεst di it we wi de it. Dis kin mek di bɔdi nɔ ebul fɔ tek di tin dɛn we de insay di it fayn fayn wan. Apat frɔm di lɔng ɛn pankrias, i kin afɛkt di liva, sayn, insay, ɛn di say dɛn we pɔsin kin du mami ɛn dadi biznɛs.

CF na wan jenɛtik kɔndishɔn we dɛn bɔn pɔsin wit. Dis min se na sik wae de kam wae yu de liv yu layf wae kin wɔs as tɛm de go. Pipul wae gɛt CF kin gɛt shɔt layf pas pipul dɛm wae nɔr gɛt CF.

Yu tink se men kayn sik dɛn de we gɛt sistik fibrosis (CF)?

Yes, yu kin no tu men kayn `CF`:

1. Klasik sistik fibrosis: dis kin afekt plεnti כgan dεm na di bכdi. Bɔrku tɛm, dɛn kin no dis sik insay di fɔs sɔm ia wae pɔrsin de liv.

2. Atypical cystic fibrosis: Dis na wan we we nɔ kin rili siriɔs, we nɔ kin izi fɔ gɛt CF. I kin afɛkt wan ɔgan nɔmɔ, ɔ di sayn dɛn kin kam ɛn go. Bɔrku tɛm, dɛn kin no bɔt am pan big pikin dɛm ɔr yɔŋ pipul dɛm.

Wetin na di sayn dɛm fɔ sistik fibrosis (CF)?

Pɔsin wae gɛt CF kin gɛt sɔm kayn sik lɛk:

• Infεkshכn dεm we de kam wit lכng bכku bכku (e.g., nyumonia כ br כnkaytis we de kam bak) .). Imajin, sɔm yɔŋ pikin dɛn kin gɛt ɔltɛm dɛn nos we de rɔn, kɔf, ɛn swɛt na dɛn chɛst, ɛn ivin we dɛn tek mɛrɛsin, dɛn kin kɔntinyu fɔ kam bak bak ɛn bak ɛn dɛn nɔ kin gɛt ɛni fridɔm. Na so i bi.
• Pas stɔl dɛn we lɔs ɔ we gɛt ɔyl.
• I nɔ kin izi fɔ yu fɔ blo.
• Wiz na sawnd we de kɔmɔt na di chɛst ɔltɛm ɛn we de rɔtin.
• Infεkshכn dεm na di sayn fכs tεm.
• Kɔf we de kɔntinyu fɔ kɔf.
• Di grow we pɔsin de gro sloslo.
• If yu nɔ ebul fɔ gro fayn, pan ɔl we yu de it fayn ɛn gɛt di kalori dɛn we yu bɔdi nid, na tin we yu nɔ de gɛt wet ɔ yu nɔ de tan lɛk tin.

Di simptom dɛm fɔ atypical sistik fibrosis (Atypical CF) .

Pipul wae gɛt atypical CF kin gɛt sɔm pan de sik dɛm wae wi bin dɔn tɔk bɔt bak. As tɛm de go, dɛn kin gɛt tin dɛn bak lɛk:

• Saynaytis we nɔ de mɛn.
• Polip dɛn we de na di nos.
• di abnכmal εlektrolayt lεvεl dεm na di bכdi kin mek di wata nכ de na di bכdi כ i kin mek i gεt hεtstrok.
• Rɔnbɛlɛ.
• Pankriaytis we gɛt sik.
• We yu nɔ bin want fɔ lɔs yu wet.

Wetin kin mek pɔsin gɛt sistik fibrosis (CF)?

di men tin we de mek CF na di mכtεshכn (vεryכnt כ ​​mכtεshכn) insay wan jin we dεn kכl CFTR. di CFTR jin de mek wan protin we de wok lεk ayכn chεnal na di sεl dεm. Tink bɔt am lɛk smɔl get we de na di sɛl mɛmbran. Dɛn get dɛn ya kin mek sɔm patikyula tin dɛn pas.

di protin we di `CFTR` jin de prodyuz nכmal fכ akt lεk get fכ klorayd ayכ n dεm (wan kayn sכl we gεt nεgεtiv ilektrikal chaj). we klorayd ayכn dεm kכmכt na di sεl, dεn de drכ wata bak insay Dis na we mכkus de tכn εn slip. bכt insay pipul dεm we gεt `CF`, dis prכsεs nכ de apin fayn biכs fכ di mכtεshכn dεm na di `CFTR` jin. afta dat di klorayd ayכn dεm kin trכp insay di sεl dεm, we kin mek di mכkus tik εn stika.

difrεn tכp dεm de fכ CFTR jin mכtεshכn (klas I to VI). Sכm mכtεshכn dεm nכ de prodyuz eni protin, sכm de prodyuz sכm protin nכmכ, εn sכm nכ de prodyuz di protin we dεn de mek.

Yu tink se sistik fibrosis (CF) na sik we dɛn bɔn wit?

Yes, `CF` na jεnεtik kכndishכn we dεn kin gεt frכm we dεn bכn am. pכsin we gεt `CF` de inhεrit tu kכpi fכ dis mutated `CFTR` jin – wan frכm di mama, εn wan frכm di papa (dεn kכl dis `autosomal recessive` inheritance).

Yu mama ɛn papa nɔ nid fɔ gɛt CF fɔ mek yu gɛt CF. Infakt, bɔrku famili nɔr gɛt famili histri fɔ CF. Dɛn kɔl pɔsin we gɛt wan kɔpi nɔmɔ pan di jin we dɔn chenj . Di wan dɛn we gɛt di sik nɔ de sho di sayn dɛm fɔ CF.

Yu tink se big pipul dɛn kin gɛt sistik fibrosis (CF) bak?

Nɔ, dɛn bɔn yu wit di jin muteshɔn we de mek yu gɛt CF. Bɔt if de sik nɔr kin so, ɔr if dɛn kin kam ɛn go, sɔm pipul dɛn nɔ kin no bɔt am te dɛn dɔn big, sɔntɛm dɛn kin ivin big.

Wetin na di prɔblɛm dɛn we pɔsin kin gɛt we i gɛt CF?

CF kin mek prɔblɛm dɛn lɛk:

• Infεkshכn: Tik mכkus de trap baktri dεm na yu lכng εn yu aywe, we de mek i at fכ dεm fכ kכmכt. Dis kin mek yu gɛt infɛkshɔn ɔltɛm.
• di vas difεrεns we dεn bכn wit baylatarכl (CBAVD): insay dis kכndishכn, man dεm nכ gεt di vas difεrεns, di tכb we de kכri sεl dεm. So, dɛn nid ɛp fɔ mɛn pikin dɛn if dɛn want fɔ bɔn pikin.
• Dayabitis: Dayabitis we gɛt fɔ du wit sistik fibrosis kin apin bikɔs di pankrias dɔn pwɛl.
• Malnutrishɔn: we tik tik mכkus nɔ de na di dijestiv sistεm εn di pankrεas εnzym dεm we de εp fכ digεst it de mek di risk fכ mכtalman it bכku.
• כstiopenia εn Ostioporosis: sik dεm we de mek di bon wik kin kam bikoz dεn nכ ebul fכ tek di nyutriεnt dεm fayn fayn wan na di dijestiv sistεm.
• Di prɔblɛm dɛn we kin apin we uman gɛt bɛlɛ: CF kin afɛkt di dijestiv sistɛm ɛn mek i nɔ gɛt bɛtɛ it. Dis kin mek di risk fɔ gɛt prɔblɛm dɛn we kin apin we uman gɛt bɛlɛ. Fɔ bɔn pikin bifo tɛm na di prɔblɛm we kin apin mɔ.

Aw dɛn kin no se pɔsin gɛt sistik fibrosis (CF)?

Dɔktɔ dɛn kin chɛk nyu bɔbɔ dɛn fɔ CF we dɛn de chɛk nyu bɔbɔ dɛn. Dɛn kin du dis bay we dɛn tek sɔm drop blɔd na di pikin in il. Insay di lab, dɛn kin tɛst dis blɔd sɛmpul fɔ wan kemikal we dɛn kɔl immunoreactive trypsinogen (IRT) . Dis na di pankrias de mek am. Pipul dɛn we gɛt CF gɛt ay levul fɔ IRT na dɛn blɔd. Dɛn kin tɛst pikin dɛn fɔ IRT we dɛn bɔn dɛn ɛn bak sɔm wiks afta dat.

Bɔt sɔm tin dɛn lɛk we dɛn bɔn pikin bifo tɛm, kin mek bak di IRT lɛvɛl go ɔp. So, if yu gɛt IRT tɛst we gɛt pɔsitiv, dat nɔ min se di pikin gɛt CF. If di pikin in IRT lɛvɛl pas aw dɛn bin de tink, di dɔktɔ go ɔda fɔ mek dɛn du ɔda tɛst fɔ mek dɛn no di las diagnosis.

sכmtεm (bכt 5% pan di kes dεm), di nyu bכbi skrinin kin nכ detekt εlevεt IRT lεvεl pan pכsin we gεt CF. Ɔ, sɔntɛm dɛn nɔ bin dɔn de tɛst yu ɔltɛm fɔ CF we dɛn bɔn yu. If yu ɔ yu pikin gɛt sayn dɛn fɔ CF, dɔktɔ go du wan swet tɛst ɛn if nid de, ɔda tɛst dɛn.

Test fɔ sistik fibrosis (CF) .

• Swet tɛst: .Dis kin mɛzhɔ di kayn klorayd we de na yu swet. Pipul wae gɛt CF kin gɛt bɔrku klorayd na dɛn swet. Dis na di mכst spεsifi k tεst fכ no CF. Bɔt i kin bi nɔmal fɔ pipul dɛn we gɛt atypical CF.
• Jɛnɛtik tɛst: Dɛn kin tek blɔd sɛmpul fɔ chɛk fɔ si if di jin dɛn we de mek pɔsin gɛt CF chenj.
• Imej tɛst: Dɛn kin yuz tin dɛn lɛk X-ray na di nos ɛn di chɛst fɔ kɔnfɔm ɔ sɔpɔt di diagnosis fɔ CF. Dɛn imej tɛst ya nɔmɔ nɔ kin ebul fɔ no CF.
• Pulmonary function tests (PFT): Dɛn wan ya de mɛzhɔ aw yu lɔng dɛn de wok fayn fayn wan.
• Sputum culture: Yu dɔktɔ go tek wan sampul pan di mucus we de kɔmɔt na yu lɔng we yu de kɔf ɛn tɛst am fɔ baktri. Sɔm kayn baktri dɛm, lɛk Pseudomonas, kin mɔs pan pipul dɛm wae gɛt CF.
• Pankrias bayɔpsi: Dis kin mek yu dɔktɔ si if ɛni sist ɔ lɛsin de na yu pankrias.
• difrεns pan di nos pכtεnshal (NPD): dis de mכsu di sכm ilektrikal chaj we nכmal fכ de na di layn na di nos. Dis chaj na di muvmɛnt we di ayɔn dɛn de muv. Pipul dεm we gεt CF gεt bכku muvmεnt fכ ayכn biכs fכ di we aw CF de afekt di ayכn chεnal dεm.
• Intestinal current measurement (ICM): Fכ du dis tεst, dכkta de tek sεmpl fכ rεktal tisu. di lab de mכsu aw mכch klorayd de kכmכt frכm dis sεmpl.

Aw dɛn kin trit sistik fibrosis (CF)?

I sɔri fɔ no se, no mɛrɛsin nɔ de fɔ CF. Bɔt wit di ɛp we CF spɛshal pɔsin ɛn ɔda pipul dɛn we de na yu wɛlbɔdi tim, yu kin ebul fɔ kɔntrol di sik ɛn di sayn dɛm we i kin gɛt. Dis manejmɛnt inklud:

• Fɔ kip di say dɛn we di briz de blo klia ɛn opin bay we yu de yuz di we aw yu de blo ɛn tin dɛn we de sɔlv di blɔd.
• Drug dεm we de εp fכ kכrekt prכblεm wit di `CFTR` protin (`CFTR modulators`).
• Mɛrɛsin dɛm wae de ridyus sɔm patikyula sayn dɛm.
• Mek shɔ se yu gɛt inof ɛn di rayt kalori frɔm it.
• Ɔpreshɔn.

Teknik dɛn fɔ klia di aywe

If yu gɛt CF, sɔm we dɛn de fɔ mek yu aywe dɛn klia:

• Kɔf ɛn brith tɛknik: Fizik thɛrapist we spɛshal pan CF kin tich yu tɛknik fɔ opin yu aywe ɛn lɔs di mכkus.
• Pozitiv ɛkspiratɔri prɛshɔn (PEP) divays dɛn:Dɛn kin wɛr dɛn `PEP` divays ya na yu mɔt ɔ as `mask` na yu fes. Dɛn kin mek yu nɔ ebul fɔ blo, so yu fɔ wok tranga wan fɔ mek yu blo. dis de opin di aywe dεm εn push di mכkus kכmכt. vaybrεshכn `PEP` divays dεm (e.g. `Flutter®`, `Acapella®`, `AerobikA®`, `RC-Cornet®` ) na spεshal tכp dεm fכ `PEP` we de kכmbayn vaybreshכn wit di abiliti fכ lכs mכkus.
• Airway clearance vest: Dɛn kin kɔl am bak ay-frikyuɛnsi chɛst wɔl oscillation divays, dis na inflatable vest we dɛn kɔnɛkt to mashin. Di vest de shek shek ɛn brok di mכkus.
• Postural drenage ɛn percussion: Dis na fizik tɛrapi tɛknik. Yu de muf go na pozishɔn dɛn we de ɛp fɔ klin di mכkus frɔm yu lכng. Ɔda pɔsin kin tap yu chɛst ɛn/ɔ bak fɔ ɛp fɔ mek di mכkus lɔs. Dɛn kin du dis togɛda wit di we aw pɔsin kin kɔf.

CFTR modulators fɔ sistik fibrosis

CFTR mכdulet dεm na wan klas fכ dכg dεm we de εp fכ kכrekt prכblεm wit di protin dεm we di mutated CFTR jin mek εn inkrεs di amoun fכ di protin we de wok fayn fayn wan pan di sεl dεm. Dɛn nɔ de mɛn CF. Bɔt sɔm pipul dɛn dɔn gɛt bɔrku impɔtant improvement pan dɛn symptom ɛn layf ɛkspɛkt. Bɔt dɛn modulator tritmɛnt ya nɔ fayn fɔ ɔlman we gɛt CF, ɛn sɔm nɔ kin ebul fɔ telɛ dɛn.

Sɔm ɛgzampul dɛn fɔ `CFTR modulator`:

• `Kalydeco® (ivakaftɔr)`
• ``Orkambi® (ivakaftɔr/lumakaftɔr)''.
• `Symdeko® (ivakaftɔr/tezakaftɔr)`
• `Trikafta® (ivakaftɔr/tezakaftɔr/ɛleksakaftɔr)`

Ɔda mɛrɛsin dɛn fɔ sistik fibrosis

Yu dɔktɔ kin gi yu ɔda mɛrɛsin bak fɔ ridyus di inflamɛns, fɔ trit infɛkshɔn, ɔ fɔ kɔntrol di sayn dɛm. Dɛn tin ya na:

• Antibayɔtik: Yu dɔktɔ kin gi yu antibayɔtik fɔ trit ɔ fɔ mek yu nɔ gɛt di sik.
• Inhaled bronchodilators: Bronchodilators de opin ɛn rilaks di say dɛn we di briz de blo, we de mek i izi fɔ blo.
• Inhaled hypertonic saline: Di sɔl we de insay salin sɔlvushɔn de atrak wata, we de mek di mכkus tan ɛn mek i izi fɔ kɔf.
• Anti-inflammatory drugs: Dɛn drɔgs ya de ridyus di swel. Dɛn tin ya na kɔtikosterɔyd ɛn nɔ-stɛroyd anti-inflammatory drugs (NSAIDS) .
• di εnzym dεm na di pankrεas: dεn ya de εp fכ digεst di it εn fכ tek di nyutriεnt dεm frכm am.
• Stul softeners: Dɛn tin ya kin ɛp wit kɔndishɔn lɛk kɔnstipɛshɔn ɛn mek am izi fɔ pas stɔl.

Di it fɔ sistik fibrosis (CF) .

If yu gɛt CF, di tin dɛn we yu nid fɔ it difrɛn frɔm di wan dɛn we pɔsin we nɔ gɛt CF gɛt. Bikɔs ɔf CF, yu pankrias nɔ go ebul fɔ mek ɔ pul di ɛnzaym dɛn we de ɛp fɔ dayjɛst it. Dis min se yu insay nɔ go ebul fɔ tek di it ɛn fat fayn fayn wan.

Yu CF spɛshal ɔr rɛjista dayatist go rikɔmɛnd wan nyutrishɔn plan fɔ yu. I kin bi se:

• Di kalori we yu de it ɛvride. Dis kin bi lɛk tu tɛm pas pɔsin we nɔ gɛt CF.
• Fɔ it tin we gɛt bɔku fat. Dis impɔtant fɔ gɛt mɔ vaytamɛn dɛn we kin sɔlv di fat.
• Fɔ kip yu bɔdi wet we pas di nɔmal bɔdi frɔm we yu smɔl. Dis kin ɛp yu fɔ gro lɔng ɛn yu lɔng dɛn kin bɔku. Dis kin ɛp wit di sayn dɛm wae yu de gɛt as yu de ol.
• Tek enzym supliment kapsul. di εnzym supliment dεm de εp fכ digεst.
• Ad mɔ sɔl to yu it. Dis kin ɛp fɔ tek di ɛkstra sɔl we yu bɔdi kin lɔs tru we yu de swet. Dis impɔtant mɔ we di wɛda wam ɛn wet ɛn we yu de du ɛksɛsayz. Aks yu dɔktɔ bɔt ɔmɔs sɔl yu nid fɔ wan de.

Ɔpreshɔn fɔ sistik fibrosis (CF) .

Yu kin nid ɔpreshɔn fɔ CF ɔ wan kɔmplikeshɔn fɔ CF. Dis kin inklud:

• Ɔpreshɔn dɛn we gɛt fɔ du wit di nos ɔ di sayn dɛn.
• Ɔpreshɔn fɔ pul di tin dɛn we de ambɔg di intestinal.
• Transplant fɔ di lɔng.
• Liva transplant we dɛn kin yuz fɔ transplant.

Yu tink se sistik fibrosis (CF) na sik we kin mek pɔsin in layf de pan denja?

Yɛs, CF na wan sik we kin mek pɔsin in layf de pan denja. Di men tin we kin mek pɔsin day na di lכng damej we kin kam bikɔs ɔf tik mכkus ɛn infεkshכn we i kin gɛt na in lכng bכku tεm.

Wetin na di layf we pɔsin we gɛt sistik fibrosis (CF) kin liv?

Akɔdin to masta sabi bukman dɛm, insay di las ia dɛm, di layf we pɔsin we dɛn bɔn wit CF kin liv na lɛk 50 ia so. Fɔ sɔm ia bifo dis tɛm, di layf we pɔsin kin liv bin de bitwin 30 ɛn 40 ia, bɔt dis dɔn bɔku insay di las ia bikɔs dɛn dɔn go bifo pan di we aw dɛn de trit am.

Pipul wae gɛt atypical CF kin gɛt lɔng layf pas di wan dɛm wae gɛt klas CF.

Wetin a fɔ ɛkspɛkt if a gɛt CF?

No mɛrɛsin nɔ de fɔ CF. Yu ɔ yu pikin go nid tritmɛnt fɔ ɔl yu layf fɔ mek i ebul fɔ kɔntrol am. Dis inklud fɔ trit infɛkshɔn, fɔ kip it, ɛn fɔ go to CF spɛshal pɔsin ɔltɛm. Bɔt nyu tritmɛnt dɛn dɔn ɛp pikin dɛn we gɛt CF fɔ liv fayn fayn wan te dɛn big ɛn gɛt bɛtɛ kwaliti layf.

Di tritmɛnt kin wok fayn we dɛn no CF kwik kwik wan. Na dat mek i rili impɔtant fɔ chɛk di nyu bɔbɔ dɛn. Fɔ stat tritmɛnt lɛk CFTR modulators we yu smɔl, i kin mek yu gɛt wɛlbɔdi fɔ lɔng tɛm ɛn i kin mek yu liv lɔng.

Yu tink se dɛn kin ebul fɔ mek dɛn nɔ gɛt CF?

Bikɔs CF na sɔntin we dɛn bɔn yu wit, no we nɔ de fɔ mek i nɔ apin. If yu na pɔsin we gɛt CFTR jin muteshon, yu kin aks yu dɔktɔ bɔt di jenɛtik tɛst we dɛn kin du bifo dɛn bɔn pikin ɛn di chans we yu pikin dɛn gɛt fɔ gɛt CF.

Aw a go tek kia ɔf misɛf?

Fɔ kia fɔ yusɛf wit CF min fɔ wok wit yu wɛlbɔdi tim fɔ mek wan tritmɛnt plan. Fɔ mek yu gɛt wɛlbɔdi, yu nid fɔ fala dis plan gud gud wan. I gɛt fɔ du wit:

• Fɔ fala di we aw yu de klin di we aw yu de blo strikt wan.
• Fɔ tek mɛrɛsin lɛk aw dɛn tɛl yu fɔ tek.
• Kɔntinyu fɔ atɛnd klinik wit yu CF mɛdikal tim.

Gɛt rɛkɛmɔndeshɔn frɔm yu dɔktɔ dɛm bɔt aw fɔ it fayn fayn wan ɛn fɔ du fayn fayn tin dɛm fɔ yu bɔdi we go fayn fɔ yu. Aks yu dɔktɔ if pulmonary rihabiliteshɔn na fayn tin fɔ yu.

Yu kin ridyus di risk fɔ gɛt di sik bay we yu avɔyd pipul dɛn we sik, praktis gud we fɔ was yu an, ɛn gɛt di vaysin dɛn we dɛn kin tɛl yu .

Yu kin tek pat bak pan klinik trial dɛm we de tɛst nyu tritmɛnt fɔ CF. Aks yu dɔktɔ if ɛni wan de we fayn fɔ yu. Mek shɔ se yu gɛt ful infɔmeshɔn bɔt di bɛnifit ɛn risk dɛn we dɛn kin gɛt we dɛn de du klinik trial.

Ustɛm a fɔ go to mi dɔktɔ?

Atɛnd ɔl di klinik dɛm we dɛn dɔn sɛtul wit di mɛmba dɛm na yu wɛlbɔdi tim. Tɔk to yu dɔktɔ if yu gɛt ɛni kwɛstyɔn bɔt yu tritmɛnt plan ɔr yu sayn dɛm. Aks dɛm wetin fɔ du if yu gɛt sayn dɛm fɔ se yu gɛt di sik. Yu kin tɛl dɛn bak if yu nid ɛp wit prɔblɛm dɛn we yu gɛt wit ɔda pipul dɛn ɔ we yu de fil.

Ustɛm a fɔ go na di Imejɛnsi Dipatmɛnt (ETU) ?

If yu gɛt dɛn bad bad sayn ya, go na di imejensi rum wantɛm wantɛm:

• Ay fiva (we pas 103 digri F/40 digri sɛlshiɔs).
• I nɔ kin izi fɔ yu fɔ blo.
• Nɔ ɔ rili smɔl urine we de kɔmɔt.
• Pen we de kɔntinyu fɔ de na di chɛst ɔ di bɛlɛ.
• Diziz we pɔsin kin gɛt.
• Kɔnfyus.
• Di mɔsul dɛn kin pen bad bad wan ɔ i kin wik.
• Di sik dɛn we kin mek pɔsin sik.
• blu kכla fכ di skin, lip כ finga nεl (`cyanosis` - dis kin bi sayn fכ lכw כksijεn lεvεl na yu bכdi כ tisu dεm).
• If di fiva ɔr kɔf bɛtɛ ɔr go, den i kin wɔs bak.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

Yu kin aks yu dɔktɔ kwɛstyɔn dɛn lɛk dɛn wan ya:

• Us tritmɛnt opshɔn dɛn a gɛt?
• Wetin na di plan fɔ it fayn fayn wan we a kin fala?
• Wetin a kin du fɔ kɔntrol mi sik dɛn?
• Us sayn dɛn fɔ se a gɛt di sik a fɔ luk fɔ?
• Ustɛm a fɔ si yu bak?
• Us sayn dɛn a fɔ go na di imejensi rum fɔ?
• Yu want fɔ chɛk ɔda pipul dɛn na yu famili?

Wetin mek pipul dɛm wae gɛt CF nɔr fɔ tɔch dɛnsɛf?

Bɔku tɛm, di wan dɛn we sabi bɔt wɛlbɔdi biznɛs kin se pipul dɛn we gɛt sistik fibrosis (CF) nɔ fɔ de nia ɔda pipul dɛn. Dis na bikɔs pipul dɛm wae gɛt CF kin ebul fɔ gɛt infɛkshɔn wae ɔda pipul dɛn kin ebul fɔ kɔntrol izi wan. Dɛn kin ebul fɔ spre di jem bak to ɔda pipul dɛn we gɛt CF (we dɛnsɛf gɛt infɛkshɔn we at fɔ kɔntrol). Pipul wae gɛt CF fɔ avɔyd bak ɛnibɔdi wae sik.

Fɔ dɔn, sɔntin (Tek-Home Message) .

Na nɔmal tin fɔ fil lɛk yu at pwɛl smɔl we dɛn no se yu gɛt wan sik we yu go gɛt fɔ yu layf. Bɔt nyu tritmɛnt ɛn fɔ ɔndastand mɔ bɔt sistik fibrosis min se yu gɛt mɔ tɛm fɔ tek tin wan de wan tɛm. Bɔrku pipul dɛm wae gɛt CF kin ɛkspɛkt naw fɔ liv ful layf te dɛn big. Pikin we dɛn no se gɛt CF tide go mɔs gɛt mɔ tritmɛnt opshɔn dɛn tumara bambay.

Gayd wan tim fɔ pipul dɛm wae yu lɛk ɛn mɛdikal pɔrsin wae yu trɔst fɔ ɔndastand wetin fɔ ɛkspɛkt, fɔ ɛp yu fɔ bia wit di prɔblɛm dɛm wae de mit yu ɛvride. Ɛn, nɔ fred fɔ gɛt sɛkɔn opinion ɛni pɔynt na di rod. Nɔto yu wan de, ɛn bɔku pipul dɛn de we go ɛp yu fɔ du dis waka.

` Sistik fibrosis, jεnεtik sik dεm, lכng sik dεm, mכkus, CFTR jin, pikin dεm hεlth, prכblεm dεm we dεn de blo