Bɔku tɛm yu kin gɛt kol, flu, ɛn kɔf? Ɔ yu nɔ kin go fɔ wan mɔnt we yu nɔ gɛt infɛkshɔn na yu yes, yu trot, ɔ yu chɛst? Sɔntɛnde wi kin tink se dis na nɔmal tin, "Na so mi bɔdi de wok." Pan ɔl we yu padi dɛn kin kol smɔl ɛn wɛl insay tu ɔ tri dez, yu kin gɛt di sem tin fɔ sɔm wiks ɛn i nɔ kin bɛtɛ, sɔntɛm i kin ivin go bifo to nyumonia? Di rial rizin fɔ dɛn tin ya nɔ kin bi yu bɔdi. Tide wi go tɔk bɔt wan sik we ayd biɛn dis, bɔt we nɔbɔdi nɔ de tɔk bɔt bɔku. Dat na CVID.
Fɔ tɔk am simpul wan, wetin na CVID?
CVID na di ful nem fɔ Kɔmɔn Variable Immunodeficiency . Dis na wan jenɛtik kɔndishɔn we de afɛkt wi imyun sistɛm. Fɔ tɔk am simpul wan, wi bɔdi tan lɛk kɔntri. Ami de fɔ protɛkt da kɔntri de. Dis ami na wi imyun sistɛm. Dis ami de fɛt fɔrina dɛn we de kam insay wi, lɛk vayrɔs ɛn baktri, ɛn i de protɛkt wi bɔdi fɔ mek i nɔ sik.
Insay dis ami, sɔm sojaman dɛn de we dɛn dɔn tren spɛshal. Wi kin kɔl dɛn antibodi . Dɛn antibodi ya na wan kayn prɔtin. We wan smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl.
Naw, na dis kin apin to pɔsin we gɛt CVID. Dɛn bɔdi de mek smɔl pan dɛn sojaman dɛn ya we dɛn kɔl antibodies. Dat min se dɛn bɔdi in ami wik. So we wan jem kam insay di bɔdi, sojaman dɛn nɔ de fɔ fɛt am. Di rizulyt na dat dɛn kin sik mɔ ɛn mɔ. Dɔn bak, di sik we dɛn kin gɛt kin tranga pas di wan we nɔmal pɔsin, ɛn i kin tek lɔng tɛm fɔ mek i wɛl.
Di impɔtant tin na dat bikɔs ɔf dis lɔk fɔ antibodi, ivin di vaysin dɛm we wi kin gɛt fɔ protɛkt wisɛf frɔm sik sɔmtɛm nɔ kin wok fayn. Bikɔs vaysin de mek wan jem kam na wi bɔdi ɛn tren am fɔ mek antibodi dɛn fɔ fɛt am. Bɔt pɔrsin wae gɛt CVID in bɔdi nɔr kin ebul fɔ mek antibodi dɛm da we de.
Pan ɔl we dɛn kin no dis sik bɔku tɛm we dɛn big, sɔntɛnde di sayn dɛn kin bigin we dɛn smɔl.
Wetin na di sayn dɛm fɔ CVID?
Di men ɛn kɔmɔn sayn fɔ dis sik na fɔ gɛt infɛkshɔn ɔltɛm. Bɔt bɔku ɔda sayn dɛn de we yu kin si apat frɔm dat. Lɛ wi tek wan luk pan wetin dɛn bi.
| Kategori fɔ di simptom dɛn | Tin dɛn fɔ si |
|---|---|
| Infekshɔn dɛn we kin kam bɔku tɛm | - Fɔ gɛt sayn infɛkshɔn bɔku tɛm (Sinusitis) . - Chɛst kɔnjɛshɔn, nyumonia - Brɔnkaytis - Infεkshכn dεm na di ia - Shingles, we kin apin afta pɔsin dɔn gɛt chikinpoks |
| Prɔblɛm dɛn we de na di we aw pɔsin de blo | - Rinayt we nɔ de mɛn - Nasal kɔnjɛshɔn |
| Prɔblɛm dɛn we de na di dijestiv sistɛm | - Bɛlɛ de at - Nɔs ɛn vɔmit - Rɔnbɛlɛ |
| Ɔda tin dɛn we pipul dɛn kin du | - Di limf no dɛm we dɔn big - Fɔ lɔs yu wet fɔ no rizin - Jɔyn pen - Finga klab |
If yu gɛt wan ɔ tu pan dɛn sayn ya, dat nɔ min se yu gɛt CVID. Bɔt if yu gɛt dɛn sik ya, mɔ we yu kin gɛt infɛkshɔn ɔltɛm, fɔ lɔng tɛm, i impɔtant fɔ go to dɔktɔ wantɛm wantɛm fɔ advays.
Wetin mek CVID kin rili divɛlɔp? Wetin kin mek dis apin?
Di men rizin fɔ dis na di chenj dɛn we de apin na wi jin dɛn. Ɔltin na wi bɔdi na di instrɔkshɔn dɛn we de na wi DNA de kɔntrol am . Wi kin kɔl dɛn instrɔkshɔn ya jin. CVID de kכz fכ sכm chenj (mכtεshכn) dεm na dεn jin dεm ya.
spεshal wan, di B-sεl dεm na wi imyun sistεm na dεn de mek dεn antibodi dεm we wi bin dכn tכk bכt. biכs fכ di jεnεtik chenj dεm we de mek CVID, dεn B-sεl dεm ya nכ de ebul fכ divεlכp fayn εn rich di say we dεn kin mek antibodi dεm. dis de mek di lεvεl dεm fכ di tri men tכp dεm fכ antibodi dεm na di bכdi, IgG, IgA, εn IgM, de dכn bכku bכku wan.
Imajin se soja kamp de usay dɛn de tren sojaman dɛn. Insai CVID, wetin de hapun na se bikos of som defekt fo dis kamp, dem no fit tren di soja dem gud gud wan and send out. So sojaman dɛn nɔ de fɔ protɛkt di kɔntri.
Naw yu go de wɔnda, aw a mek dɛn chenj dɛn ya we a gɛt na mi jɛnɛtiks?
- insay lεk 10% pan di kes dεm: Dis kכndyushכn kin kכmכt frכm mama εn papa to pikin dεm.
- Insay 90% pan di kes dɛm:Wi nɔr stil no di rayt tin we kin mek dis sik kam. Dis min se pɔrsin kin gɛt dis sik ilɛksɛf nɔrbɔdi nɔr dɔn gɛt dis sik na in famili. Dɛn de du risach bak fɔ no if di tin dɛn we de apin na di envayrɔmɛnt de ɛp fɔ mek dis apin.
Ɔda kɔmplikeshɔn dɛn we kin apin bikɔs ɔf CVID
Apat frɔm we wi kin sik bɔku tɛm, CVID kin put wi pan denja bak fɔ gɛt ɔda siriɔs wɛlbɔdi prɔblɛm dɛn. Bikɔs di imyun sistɛm na sɔntin we de afɛkt wi wan ol bɔdi. We i nɔ de wok fayn, i kin afɛkt ɔda sistɛm dɛn bak.
Dizayd dɛn we de mek pɔsin nɔ ebul fɔ fɛt insɛf
Dis na we wi yon imyun sistεm de bigin fכ atak wi כwn hεlty sεl dεm. I tan lɛk se wi yon ami de atak wi yon pipul dɛn. Pipul wae gɛt CVID kin gɛt bɔrku risk fɔ gɛt dɛn kayn sik ya. Na sɔm ɛgzampul dɛn ya:
- Rimatɔyd Atraytis
- Awtoimyun Ɛmolaytik Anemia (Rɛd Blɔd Sɛl Dɛstrukshɔn) .
- Sik dɛm wae kin afɛkt wae blɔd kin rɔtin (Antiphospholipid Syndrome) .
- Sɔm sik dɛn na di liva (Autoimmune Hepatitis) .
Sik dɛn we kin apin na di Lɔng we nɔ de mɛn
If yu gɛt infɛkshɔn na yu chɛst ɔltɛm, i kin pwɛl di lɔng dɛn as tɛm de go, ɛn dis kin mek yu gɛt sik dɛn we nɔ de mɛn na yu lɔng lɛk asma, COPD, ɛn bronchiectasis.
Ɔda prɔblɛm dɛn we kin apin
- Kansa: Pipul wae gɛt CVID kin gɛt smɔl smɔl kansa na di limfatik sistɛm (lymphoma) ɛn di gastrointestinal sistɛm pas di jenɛral pipul dɛm.
- Splenomegaly: Na di splin de swel , we na pat pan di imyun sistεm.
- granulomas: sכm sכm sכm sכm sכm dεm we de fכm we di imyun sεl dεm we de na di כgan dεm lεk di lכng dεm εn di liva de kam togεda.
- Pwɛl hat: De risk de fɔ gɛt pwɛl hat bikɔs ɔf de strɛs wae de kam wit pɔrsin wae gɛt dis sik fɔ lɔng tɛm.
Aw dɔktɔ kin no se i gɛt CVID?
We yu go to dɔktɔ bikɔs yu kin sik bɔku tɛm, i go aks yu bɔt yu sik dɛn ɛn chɛk yu. If dɛn tink se gɛt CVID, di men we fɔ kɔnfirm am na fɔ du blɔd tɛst .
Dis blɔd tɛst de sho di kayn antibodi dɛn we de na yu blɔd. Ɛspɛshali if di lɛvɛl dɛn fɔ di IgG, IgA, ɛn IgM antibodi dɛm we wi bin dɔn tɔk bɔt rili smɔl, na wan impɔtant sayn fɔ CVID.
Apat frɔm dat, if nid de, dɛn kin du tɛst fɔ no if pɔsin gɛt jɛnɛtiks. Dɛn kin du difrɛn tɛst dɛn bak fɔ chɛk fɔ ɔda sik dɛn we pɔsin kin gɛt.
Wetin na di tritmɛnt dɛm fɔ dis? Yu tink se dɛn kin mɛn am?
CVID nɔto sik we pɔsin kin mɛn ɔltogɛda. Bɔt disNa wan sik we dɛn kin rili trit. Di men tritmɛnt fɔ dis na Immunoglobulin Riplesmɛnt Tɛrapi .
Fɔ tɔk am simpul wan, na dis say yu de gi yu bɔdi antibodi dɛm (immunoglobulins) we i nɔ ebul fɔ mek fɔ insɛf. Dɛn kin pul di antibodi dɛn frɔm di blɔd plasma fɔ pipul dɛn we gɛt wɛlbɔdi. Dis na lɛk fɔ briŋ sojaman dɛn we dɛn dɔn tren frɔm ɔda kɔntri dɛn we di kɔntri in yon sojaman dɛn nɔ go du fɔ dɛn.
Tu men we dɛn de fɔ gi dis tritmɛnt.
| Di we aw dɛn kin trit am | Tɔk bɔt |
|---|---|
| Imyunoglobulin we dɛn kin put insay di bɛlɛ (IVIg) . | Dis involv fכ gi antibodi dεm dairekt insay wan vein, lεk salin. Yu kin gɛt fɔ go na ɔspitul ɔ klinik ɛvri 3-4 wik fɔ gɛt dis tritmɛnt. |
| Immunoglobulin we de ɔnda di bɔdi (SCIg) . | dis involv fכ injεkt antibodi dεm כnda di skin (insay di bכdi כ di tכŋ) we yu de yuz sכmכl nidul. Dis kin bi na os , wan tɛm insay di wik ɔ ɛvri tu wik . |
Yu dɔktɔ go disayd uswan pan dɛn tu tritmɛnt ya go fayn fɔ yu. Dis tritmɛnt na sɔntin we yu nid fɔ tek fɔ di res ɔf yu layf . If yu tek dis tritmɛnt kɔrɛkt wan, yu kin kɔntrol bɔku pan di frɛkuɛns we di sik kin kam.
Apat frɔm dat, if baktriyal infɛkshɔn kam, dɛn kin gi yu antibayɔtik fɔ trit am, ɛn dɛn kin tɛl yu fɔ kɔntinyu fɔ tek antibayɔtik fɔ mek yu nɔ gɛt di sik.
Wetin yu nid fɔ no we yu de liv wit CVID?
Pan ɔl we fɔ liv wit CVID kin fil tranga, wit di rayt we fɔ manej ɛn no, yu kin liv nɔmal layf.
- Nɔ skip tritmɛnt: I impɔtant fɔ tek yu antiretroviral tritmɛnt di rayt tɛm ɛn di rayt doz.
- Wach fɔ sayn dɛn we de sho se yu gɛt di sik:If yu notis ɛni fɔs sayn fɔ sho se yu gɛt di sik, lɛk fiva, kɔf, ɔ bɔdi we de at, tɛl yu dɔktɔ wantɛm wantɛm. If yu bigin tritmɛnt kwik, dat kin ɛp fɔ mek di sik nɔ wɔs.
- Vaksin: Nɔ gɛt ɛni vaysin if yu nɔ go to yu dɔktɔ fɔs. Layf vaysin, mɔ di wan dɛn we gɛt layf vayrɔs, kin denja fɔ pipul dɛn we gɛt CVID.
- Skrin fɔ ɔda prɔblɛm dɛn: Fɔ no di fɔs sayn dɛm fɔ sik dɛm we gɛt fɔ du wit CVID lɛk kansa ɛn lɔng sik, yu dɔktɔ go rifer yu fɔ mek dɛn chɛk yu ɔltɛm . Nɔ mis dɛn.
- Mental hεlth: Na nɔrmal tin fɔ fil strɛs wae yu de liv wit sik wae de kam fɔ lɔng tɛm. If yu de fil bad ɔr de wɔri, tɔk to yu dɔktɔ ɔr pɔrsin wae de nia yu bɔt dis.
Fɔ sɔm dikɛd ia bifo dis tɛm, CVID na bin sik we de mek pɔsin nɔ ebul fɔ liv igen. Bɔt wit di antibodi tritmɛnt dɛm tide, pas 75% pan di wan dɛm wae gɛt CVID de liv pas 25 ia afta dɛn dɔn no se dɛn gɛt am. So if yu gɛt di rayt tritmɛnt, i pɔsibul fɔ liv lɔng layf ɛn gɛt wɛlbɔdi.
Ustɛm a fɔ go to dɔktɔ?
If yu gɛt tin dɛn lɛk dis, mek shɔ se yu go to dɔktɔ ɛn aks fɔ advays.
- If yu gɛt baktriyal infɛkshɔn ɔltɛm: Fɔ ɛgzampul, if yu gɛt nyumonia, saynsaytis, ɔ yu yes infɛkshɔn bɔku tɛm insay di ia.
- If sɔm sayn dɛm de fɔ lɔng tɛm: tin dɛm lɛk fɔ gɛt bɛlɛ ɔltɛm, fɔ blo, ɛn fɔ gɛt prɔblɛm wit yu lɔng.
- If yu sik afta yu dɔn gɛt layf vaysin.
We yu tɔk to yu dɔktɔ bɔt dɛn tin ya, i go ebul fɔ disayd if dis na sɔntin we nid fɔ chɛk mɔ ɔ nɔto so.
Mɛsej we dɛn kin kɛr go na os
- Bɔrku tɛm, siriɔs infɛkshɔn nɔr "nɔmal." Dɛn kin bi sayn fɔ se yu gɛt wɛlbɔdi prɔblɛm.
- CVID na wik we di imyun sistɛm wik, we min se di bɔdi nɔ ebul fɔ mek di antibodi dɛm we i nid fɔ fɛt di jem dɛm.
- Dɛn kin no dis sik bay we dɛn du simpul blɔd tɛst.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn CVID ɔltogɛda, dɛn kin ebul fɔ kɔntrol am fayn fayn wan ɛn dɛn kin gɛt wɛlbɔdi layf wit Immunoglobulin Replacement Therapy.
- If yu gɛt CVID, i rili impɔtant fɔ wok klos wit yu dɔktɔ, gɛt di rayt tritmɛnt, ɛn protɛkt yusɛf frɔm infɛkshɔn.
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