Yu kin sik ɔltɛm? I kin bi bikɔs ɔf Praymari Immunodeficiency!

Yu ɔ sɔmbɔdi na yu famili kin sik bɔku tɛm? Sɔntɛnde yu kin gɛt kɔmɔn kol ɔr flu, bɔt i kin tek lɔng tɛm fɔ mek yu wɛl? Ɔ yu kin gɛt di sem sik bak ɛn bak? Sɔntɛnde, di rizin fɔ dis kin bi we wi bɔdi in imyun sistɛm wik , we de fɛt sik dɛn. Tide wi go tɔk bɔt dis kayn tin, we na praymari imyunodefisiɛns, ɔ as dɛn kɔl am na Inglish `(Primary Immunodeficiency)`.

Wetin na Praymari Imyunodefisiɛns?

Fɔ tɔk am simpul wan, praymari imyun dɛfisiɛns na grup we gɛt pas 400 difrɛn tin dɛn we wi imyun sistɛm nɔ de wok fayn . Tink bɔt am dis we: wi bɔdi tan lɛk fɔt. Sojaman dɛn de fɔ protɛkt dis fɔt. Dɛn sojaman dɛn de na wi imyun sistɛm. So, if dɛn sojaman ya wik, ɔ if dɛn nɔ de wok fayn, ɛnimi dɛn we de na do, dat na, jem dɛn we gɛt sik (baktri, vayrɔs, ɛn ɔda tin dɛn), kin izi fɔ go insay di bɔdi ɛn mek sik.

Dɛn kin yuz sɔm ɔda nem dɛn fɔ dis sik:

• Praymari imyunodefisiɛns sik.
• Praymari Imyunodefisiɛns Disɔda (PIDD).
• Inborn Errors of Immuniti (IEI) we de mek pɔsin nɔ ebul fɔ du sɔntin.

dis kכndyushכn dεm kin kכz fכ chenj dεm na wi jin dεm, we dεn kכl ``jεnεtik mכtεshכn.`` dεn kin pas dכn frכm jεnereshכn to jεnereshכn, we min se dεn kin gεt dεm . Bɔt sɔntɛnde pɔrsin kin gɛt dis sik kpatakpata wae nɔr gɛt ɛni famili histri. Dɔktɔ dɛn kin trit am bay we dɛn de mek di sik nɔ kam ɛn kɔntrol am, ɛn bay we dɛn de chenj sɔm pat dɛn na di bɔdi we nɔ gɛt bɛtɛ wɛlbɔdi.

Wetin na ɛgzampul dɛn bɔt di praymari imyun dɛfisiɛns?

As a bin dɔn tɔk bifo tɛm, i pas 400 kayn praymari imyunodefisiɛns. Ɛni wan pan dɛn difrɛn, ɛn di kayn we aw dɛn kin tranga kin difrɛn . Na dat mek di ej wae dɛn kayn tin ya kin apin kin difrɛn. Sɔm kayn dɛn kin mek prɔblɛm jɔs lɛk aw dɛn bɔn pikin, we i smɔl. So dɛn kin no dɛn kwik kwik wan. Bɔt ɔda kayn dɛn de we nɔ kin rili bad. So yu nɔ go ivin no se yu gɛt dis sik te yu dɔn big.

Na sɔm ɛgzampul dɛn bɔt dis kayn tin:

• Kɔmɔn Vɛriɔbul Imyunodefisiɛns (CVID) .
• Ataxia-telangiectasia we pɔsin kin gɛt
• Di sik we dɛn kɔl Kronik Granulomatous Disease (CGD) .
• DiGeorge sindrom we gɛt di sik
• εmofagosaytik limfohistiosaytosis `(Hεmofagosaytik limfohistiosaytosis)`
• Selektiv IgA dɛfisiɛns
• Agammaglobulinemia we gɛt fɔ du wit X

Naw, nɔ kɔnfyus wit dɛn nem ya. Dis na jɔs wɔd dɛn we dɛn kin yuz fɔ mɛn pipul dɛn. De tin wae impɔtant pas ɔl na fɔ go to dɔktɔ if yu gɛt ɛni dawt fɔ no if yu gɛt dis sik.

Wetin na di sayn dɛm fɔ di praymari imyun dɛfisiɛns?

Fɔ bɔku pipul dɛn, di fɔs sayn fɔ di praymar immunodeficiency na we dɛn kin gɛt infekshɔn ɔltɛm, we kin kɔntinyu fɔ de, ɔ we nɔ kin izi fɔ trit . Dɛn sik ya kin rili siriɔs , ɔ ɔda pipul dɛn na di famili kin gɛt dɛn kayn prɔblɛm ya.

Ɔda sayn dɛm wae yu kin si na:

• Fɔ tek antibayɔtik bɔku tɛm fɔ mɛn infɛkshɔn.
• Prɔblɛm dɛn we kin apin afta dɛn dɔn gɛt layf vaysin.
• di splin we big (Di splin na wan כgan we de na di כp pat na di lεft say na wi bכdi we de εp di imyun sistεm).
• di limf no dεm we swεla (dεn wan dεm we de fil lεk lumps na di an).
• We yu de lɔs yu wet ɔ yu nɔ de gro fayn (espɛshali pan yɔŋ pikin dɛm).
• Prɔblɛm dɛn we kin kam wit di dijestiv ɔltɛm lɛk dayarɛa.
• כtoimyun sik dεm ( kכndishכn dεm we wi bכdi in imyun sistεm de atak wi כwn sεl dεm).

Imajin, yu pikin gɛt fiva ɛn kɔf wan ɔ tu tɛm insay di mɔnt ɛn dɛn fɔ gi am antibayɔtik. Ɔ, dɛn kin gɛt siriɔs rash ɛn blista na dɛn skin ɔltɛm, we kin tek lɔng tɛm fɔ wɛl. If dɛn tin ya kɔntinyu fɔ apin, yu nid fɔ wɔri bɔt am.

Wetin kin mek dis apin?

As a bin dɔn tɔk, di praymar immunodeficiency kin kɔmɔt frɔm di jenɛtik mutations we kin afɛkt sɔm pat dɛn na wi imyun sistɛm, lɛk sɛl ɛn protin . Dɛn jɛnɛtik chenj ya kin mek sɔm pat dɛn na wi imyun sistɛm:

• I kin bi se i nɔ kin du bɔku tin pas aw i kin bi.
• I kin bi se i nɔ fayn .
• I kin ivin dɔnawe wit am kpatakpata .

bitwin 50% εn 60% pan dεn kכndyushכn ya de kכz fכ difεkt dεm na di sεl dεm we dεn kכl B limfosayt dεm (B sεl dεm) . dis B sεl dεm na spεshal kayn sεl na wi imyun sistεm. Na dεn wan dεm de mek antibodi , spεshal protin dεm we de εp fכ pwεl pathogens lεk baktri dεm εn vayrus dεm we de kam insay wi bכdi. So imajin, if dɛn B sɛl ya nɔ de wok fayn, if dɛn nɔ de mek antibodi, wi bɔdi kin gɛt sik mɔ, nɔto so?

Udat de pan big risk fɔ gɛt dis sik?

Ɛnibɔdi kin gɛt PIDD. Bɔt if pɔsin na yu famili we yu bɔn gɛt am, yu go gɛt am mɔ . Bɔrku tɛm, dɛn praymar immunodeficiencies ya kin apin bifo i ol 20. Dɔn bak, fɔ man dɛmDɛn kin tɔk bak se dis sik kin bɔku.

Us prɔblɛm dɛn dis kin mek?

Praymari imyun dεfisiεns kin inkrεs di risk fכ komplikεsh כn leta na layf. Dis kin inklud ɔtoimyun disɔda ɔ sɔm kansa dɛn . If dɛn nɔ trit am, PIDD kin mek pɔsin gɛt bad bad sik dɛn we nɔ kɔmɔn .

Aw dɔktɔ dɛn kin no bɔt dis?

Yu dɔktɔ go no if yu gɛt PIDD bay we i go luk yu pasɔnal ɛn famili mɛdikal istri, ɛgzam fɔ yu bɔdi, ɛn du bɔku tɛst dɛn na lɛbɔtri .

Fɔ mek yu no se yu gɛt di sik, yu dɔktɔ kin ɔda fɔ du tɛst lɛk:

• Blɔd tɛst: Dɛn tin ya kin no sɔm patikyula tin dɛn we nɔ de apin na di imyun sistɛm (fɔ ɛgzampul, di antibodi lɛvɛl we smɔl ɔ di imyun sɛl dɛn we nɔ de bɔku).
• Jɛnɛtik tɛst: Fɔ no if di jin dɛn nɔ fayn, ɔ di chenj dɛn we de apin.
• Flow cytometry: Dis na we fכ egzamin sεmpl dεm fכ di imyun sistεm sεl dεm we dεn de yuz spεshal lεzεr bim dεm.

Apat frɔm dat, na sɔm kɔntri dɛn lɛk Amɛrika, dɛn kin du nyu bɔbɔ we dɛn jɔs bɔn fɔ chɛk fɔ si if dɛn gɛt wan kayn sik we dɛn kɔl siriɔs kɔmbayn imyunodefisiɛns (SCID). dis kin mek dεn kin no di pikin dεm we gεt dis siriכs kכndyushכn kwik kwik wan εn trit dεm.

Wetin na di tritmɛnt dɛm fɔ dis?

If dɛn no se yu gɛt praymari imyunodeficiency, di men gol dɛm fɔ tritmɛnt na fɔ kɔntrol di infɛkshɔn dɛm we de naw ɛn fɔ mek yu nɔ gɛt infɛkshɔn tumara bambay. Di rayt tritmɛnt we yu go gɛt go dipen pan di kayn infekshɔn we yu gɛt ɛn di kayn PIDD.

Yu dɔktɔ kin gi yu mɛrɛsin dɛn lɛk:

• Antibayɔtik: Fɔ protɛkt ɔ trit baktriyal infɛkshɔn.
• Antivayrɔs: Ɛp fɔ wɛl frɔm infɛkshɔn we vayrɔs kin kam wit.
• Imyun globulin: Dɛn kin gi dɛn tin ya insay di bɛlɛ (IV) ɔ ɔnda di bɔdi. dεn de wok bay we dεn de riples sכm pat dεm na di imyun sistεm we nכ de (lεk di antibodi dεm we tu lכw).

Sɔntɛnde, i kin nid fɔ du ɔpreshɔn fɔ kɔntrol di prɔblɛm dɛn we di infɛkshɔn kin kam wit. fכ egzampl, if absεs (we na wan kכlekshכn fכ pus insay di כgan), dεn kin כpכshכn kכmכt fכ pul di pus. Dis kin ɛp fɔ ridyus di pen ɛn mek i wɛl kwik kwik wan.

If i rili bad, di dɔktɔ kin du wan stem sɛl transplant.Dɛn kin rikɔmɛnd am. Dis involv fɔ riples di imyun sistɛm sɛl dɛn we nɔ fayn ɔ we dɔn lɔs wit nyu sɛl dɛn. insay dis, dεn kin injεkt stεm sεl dεm (we kin divεlכp to כda kayn sεl dεm) we dεn tek frכm wan dכna insay yu bכdi. as tεm de go, dεn stεm sεl dεm ya de divεlכp to nכmal imyun sistεm sεl dεm.

Jin tɛrapi dɔn bi bak wan saksesful tritmɛnt opshɔn fɔ sɔm kayn PIDD.

Yu tink se dɛn kin ebul fɔ protɛkt di praymari imyun dɛfisiɛns?

Bikɔs bɔku pan di PIDD dɛn kin kɔmɔt frɔm di jenɛtik muteshon , rili no we nɔ de fɔ mek dɛn nɔ apin. Bɔt if pɔsin na yu famili gɛt di men sik we de mek i nɔ ebul fɔ fɛt di sik, yu kin tink bɔt aw fɔ advays yu bɔt yu jɛnɛtiks . Dis kin mek yu no mɔ ɛn gayd yu.

Wetin go apin tumara bambay fɔ di wan dɛn we gɛt dis sik? (Predikshɔn)

If dɛn trit dɛn fayn, bɔku pipul dɛn we gɛt PIDD kin liv fayn layf. Sɔntɛnde, yu kin nid fɔ tek mɛrɛsin fɔ di res ɔf yu layf. Yu fɔ du yu bɛst bak fɔ avɔyd infɛkshɔn . Na sɔm advays dɛn ya fɔ ɛp:

• Mek am yu abit fɔ was yu an fayn fayn wan — was yu an fayn fayn wan wit sop ɛn wata. Mek shɔ se yu was yu an bifo ɛn afta yu it, afta yu dɔn yuz tɔylɛt, afta yu tɔch animal, ɛn afta yu tɔch ɛnitin we dɔti.
• Stay away frɔm ples dɛn we pipul dɛn kin ful-ɔp ɛn pipul dɛn we sik .
• Fɔ fala yu dɔktɔ in instrɔkshɔn bɔt fɔ gɛt di vaysin ɛksaktɔli.
• Gɛt inof rɛst .
• Fɔ fala wan fayn it ɛn ɛksɛsayz plan we go fayn fɔ yu.

If a gɛt, ɔ a saspek se a gɛt, praymari imyunodefisiɛns, ustɛm a fɔ go to dɔktɔ?

If yu gɛt infekshɔn we nɔ de go, we nɔ kin izi fɔ yu, ɔ we de kɔntinyu fɔ kam bak, go to dɔktɔ fɔ chɛk fɔ PIDD. If yu dɔn gɛt PIDD, tɛl yu dɔktɔ wantɛm wantɛm if yu gɛt fiva ɔ ɛni sayn fɔ se yu gɛt di sik . Dis impɔtant fɔ mek yu nɔ gɛt prɔblɛm dɛn.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

If yu sɔspɛkt dis sik, ɔr if yu kam fɔ no se yu gɛt am, yu kin aks yu dɔktɔ kwɛstyɔn dɛn lɛk dis:

• Us kayn praymari imyunodefisiɛns a gɛt?
• Yu tink se mi pikin dɛn go gɛt dis?
• Us kayn tritmɛnt yu kin advays?
• Wetin na di sayd ɛfɛkt dɛn we pɔsin kin gɛt we i gɛt tritmɛnt? Aw a fɔ wɔri bɔt dɛn?
• Us kɔmplikɛshɔn kin apin bikɔs ɔf dis kɔndishɔn?

Fɔ liv wit di kɔndishɔn dɛn we gɛt fɔ du wit praymari imyunodefisiɛns kin tranga. Infεkshכn wae de kam ɔltɛm, wae de kɔntinyu, ɛn wae nɔr kin izi fɔ trit kin rili mek yu nɔr gɛt bɛtɛ trɛnk, ɛn kin gɛt big impak bak pan yu maynd wɛl bɔdi.

>

Bɔt yu nɔ nid fɔ go tru dis waka yu wan. Aks yu dɔktɔ fɔ ɛp yu fɔ fɛn sɔpɔt grup usay yu go tɔk ɛn sheb aydia wit ɔda pipul dɛn we dɔn go tru di sem kayn ɛkspiriɛns. Dis kin mek wi gɛt bɔku trɛnk.

Fɔ dɔn, mɛmba dis (Take-Home Message) .

Okay, so, na sɔm tin dɛm fɔ mɛmba fɔ sɔmtin bɔt di Praymari Immunodeficiency we wi tɔk bɔt tide:

• Dis na sik wae de kam bikɔs wi imyun sistɛm wik , bɔrku tɛm na bikɔs ɔf di jɛnɛtik kɔz dɛm .
• Wan pan di men sayn dɛm na we yu kin gɛt bɔku bɔku sik dɛn we kin tek lɔng tɛm fɔ wɛl .
• Bɔrku kayn dis de, so de sayn ɛn aw i kin tranga kin difrɛn frɔm pɔrsin to ɔda pɔrsin.
• I rili impɔtant fɔ no di sik ɛn gɛt di rayt tritmɛnt kwik kwik wan .
• If yu gɛt tritmɛnt, dɛn kin kɔntrol di sik ɛn bɔku pipul dɛn kin liv nɔmal layf .
• I impɔtant fɔ tek step fɔ protɛkt yusɛf frɔm infɛkshɔn .

If yu ɔ pɔrsin wae yu sabi gɛt ɛni wan pan dɛn sik ya, nɔr shem fɔ go to dɔktɔ. Di kwik we dɛn no se yu gɛt dis sik, na di mɔ i go bi se di tritmɛnt go wok fayn. Gud wɛlbɔdi fɔ ɔlman!

` Praymari Imyun Dεfisiεns, Imyun Sistem, Infεkshכn, Jεnεtik Mכtεshכn, PIDD, Tritmεnt, Simptom dεm