Imajin, fɔ no rizin, yu kin gɛt fiva ɔltɛm, yu jɔyn dɛn kin pen, ɛn yu kin gɛt smɔl smɔl rash ɔlsay na yu bɔdi. Dɛn tin ya kin dɔn insay tu ɔ tri dez, dɔn dɛn kin apia bak. If sɔntin lɛk dis apin to yu ɔ yu pikin, di kɔz kin bi wan sik we nɔ kin apin so ɔltɛm we bɔku pipul dɛn nɔ ivin yɛri bɔt. Tide wi de tɔk bɔt wan pan dɛn kayn sik ya, we na CAPS.
Wetin CAPS min?
Fɔ tɔk am simpul wan, Cryopyrin-Associated Periodic Syndromes, ɔ CAPS, na wan grup we gɛt sik dɛn we nɔ kin apin so ɔltɛm we kin afɛkt wi imyun sistɛm. Nɔmal wan, wi imyun sistɛm kin protɛkt wi frɔm jem ɛn ɔda sik dɛn. כltu, insay dis CAPS kכndishכn, bikoz fכ difεkt na di imyun sistεm insεf, i de stat fכ atak wi כwn bכdi. Dɛn kɔl dis ‘ɔtoinflammatory disease’ na mɛdikal sayɛns. Dis kin mek di bɔdi inflamɛns we nɔ nid fɔ apin, ɛn dis kin mek yu gɛt sɔm sayn dɛn lɛk we yu gɛt rɔsh na yu skin, fiva, yu jɔyn dɛn kin pen ɛn swel, ɛn yu yay kin rɛd.
Tri men kayn CAPS de. Lɛ wi si wetin dɛn bi.
| Di Nem fɔ di Sindrom | Diskripshɔn ɛn aw i siriɔs |
|---|---|
| Famili Kold Ɔtoinflammatory Sindrom (FCAS) . | Dis na di wan wae nɔr siriɔs pan de tri kayn sik. As di nem sho, de sik kin kam wae pɔrsin gɛt kol. Di men sayn dɛm na fiva, joyn pen, ɛn skin lɛsin. Bɔku tɛm, i nɔ kin mek di bɔdi pwɛl fɔ lɔng tɛm. |
| Di sik we dɛn kɔl Muckle-Wells Syndrome (MWS) . | Dis na smɔl tin we siriɔs pas FCAS. Nɔto kol nɔmɔ kin kam wit di sik, bɔt i kin kam bak bay strɛs ɛn ɛksesaiz . Di sayn dɛm kin tranga, ɛn sɔm pipul dɛm kin gɛt fɔ yɛri bak . |
| Nyu bכbi כnset mכltisistεm inflammatory disiz (NOMID) . | Dis na de sik wae de pasmak ɛn wae nɔr kin bɔrku pan dis grup wae gɛt dis sik.Kayn. Dis kin bigin jɔs afta dɛn bɔn pikin. I kin mek bɔku pat dɛn na di bɔdi inflamɛns. Dɛn kin kɔl am bak CINCA. If dɛn nɔ trit am fayn, i kin rili pwɛl di bren, di yay, ɛn ɔda pat dɛn . |
Wetin kin mek pɔsin gɛt CAPS?
Di men rizin fɔ dis na we wan jin na wi bɔdi chenj. fכ bi prεsis, dis sik de kכz fכ wan mכtεshכn na di jin we dεn kכl `NLRP3` .
tink bɔt dis `NLRP3` jin as bluprint we de instrɔk wi bɔdi fɔ mek wan protin we dɛn kɔl `cryopyrin`. nכmal wan, dis `cryopyrin` protin de εp wi bכdi fכ mek wan tin we dεn kכl `interleukin-1 (IL-1)`, we de εp wi bכdi fכ fכt infεkshכn.
bכt biכs di `NLRP3` jin insay pכsin we gεt CAPS de mכt, di `cryopyrin` protin dεm tu nכ de wok fayn fayn wan. i de signal di bכdi כltεm fכ mek tu mכch `IL-1`. dis pasmak prodakshכn fכ `IL-1` na in de mek di bכdi inflameshn we nכ nid εn de mek di simptom dεm fכ CAPS.
Dis sik kin apin if di pikin gɛt di jin we dɔn chenj frɔm wan mama ɔ papa nɔmɔ, we na di mama ɔ di papa. Sɔntɛnde, di jin kin chenj insɛf na di bɛlɛ, if di mama ɛn papa nɔ de.
Wetin na di sayn dɛm we de sho se yu gɛt dis sik?
Di men ɛn kɔmɔn sayn fɔ CAPS na wan rash we de sho lɛk smɔl smɔl blista dɛn we nɔ de it ɔlsay na di bɔdi . Bɔku tɛm, pɔsin kin si dis we dɛn bɔn am. Sɔm pipul dɛn kin gɛt dɛn kayn lɛsin ya ɔltɛm, bɔt dɛn kin tranga pasmak we dɛn de flay. Ɔda sayn dɛm kin difrɛn fɔ di kayn CAPS wae yu gɛt.
Simptom dɛm wae yu kin si na FCAS
Dɛn sayn ya kin te fɔ 1-2 dez.
- Fiva
- Ay dɛn we dɔn swel
- Chills we de mek pɔsin kol
- Pen na di jɔyn dɛn
- Vɔmit
- Ed de at
Di simptom dɛm we dɛn kin si na MWS
Dɛn sayn ya kin kam ɛn go. Dɛn kin las fɔ 1-3 dez wan tɛm.
- Skin rash we de kɔmɔt na di skin
- Fiva ɛn kol kol
- Di yay dɛn we de rɛd
- Pen na di jɔyn dɛn
- Di ed we de at bad bad wan
- I nɔ de yɛri fayn (pikin dɛn we gɛt MWS kin lɔs ɔl ɔ pat pan dɛn yɛri bay di tɛm we dɛn dɔn big) .
- Bɛlɛ de at
Di simptom dɛm we dɛn kin si na NOMID
Dis na di sayn dɛm wae kin rili siriɔs.
- Di ed we de at bad bad wan
- Ay dɛn we de bɔl
- Jɔyn pen ɛn swel
- Fɔ vɔmit
- I nɔ de si fayn igen
- I nɔ de yɛri fayn igen
Impɔtant: If dɛn nɔ trit NOMID fayn, wan prɔtin we dɛn kɔl amyloid kin de na di impɔtant ɔgan dɛn lɛk di kidni ɛn di jɔyn dɛn, we kin mek i gɛt siriɔs damej as tɛm de go.
Aw fɔ no di sik?
We yu go to yu dɔktɔ wit dɛn sik ya, i go aks yu fɔs bɔt yu mɛdikal istri ɛn yu famili. Dɔn, dɛn go chɛk yu ɛn if nid de, dɛn kin rifer yu fɔ sɔm tɛst dɛn, lɛk:
- Blɔd ɛn urine tɛst: Dɛn tɛst ya de luk fɔ di ay ay lɛvɛl dɛn na di wayt blɔd sɛl ɛn C-riaktiv protin, we na di tin dɛn we de sho se yu gɛt inflamɛns, ɛn fɔ si if yu gɛt bɔku prɔtin na di urine.
- Skin biopsy: Dɛn kin tek wan rili smɔl sampul pan yu skin ɛn chɛk am ɔnda maykroskɔp.
- Jεnεtik tεst: Dis tεst kin kכnfכm if yu gεt mכtεshכn na yu NLRP3 jin. Bɔt sɔmtɛm pipul dɛn we gɛt CAPS kin gɛt dis jin nɔmal wan.
- Test fɔ yu yay ɛn yes: Dɛn kin du dɛn tɛst ya fɔ si if yu si ɔ yu yɛri afɛkt.
- di lכmba pankshכn: dεn de tek sכm spεnal fכluid frכm di spεnal kכd εn dεn de egzamin fכ sayn dεm fכ inflameshn.
- MRI skan: Dis kin tek ditayli pikchɔ fɔ di strɔkchɔ dɛn we de insay di bren ɛn yes fɔ si if ɛni chenj de.
Kwɛstyɔn dɛn we yu fɔ aks di dɔktɔ
I fayn fɔ rayt sɔm kwɛstyɔn dɛn we yu gɛt pan pepa we yu go si dɔktɔ. Da we de, yu nɔ go fɔgɛt ɛnitin. Yu kin aks kwɛstyɔn dɛn lɛk dɛn wan ya:
- Us kayn CAPS a (ɔ mi pikin) gɛt?
- Us sayn dɛm wae mi kayn sik kin kɔz?
- Us tritmɛnt dɛn yu kin advays? Aw dɛn go ɛp mi?
- Ɛni bad tin de we di tritmɛnt kin du?
- Wetin a kin du na os fɔ ridyus di sayn dɛm?
- Us ɔda tɛst dɛn a fɔ dɔn du? Ustɛm a fɔ mek dɛn du dɛn?
- A nid fɔ go to pɔsin we de advays mi bɔt jɛnɛtiks?
Wetin na di tritmɛnt dɛn?
I rili impɔtant fɔ bigin tritmɛnt fɔ dis sik kwik kwik wan, bikɔs wans di yay, yes, bon, ɔ di bren dɔn pwɛl, i kin rili at fɔ mek dɛn kam bak to nɔmal.
Di men tritmɛnt na drɔgs we de blok di bɔdi fɔ mek wan tin we dɛn kɔl IL-1 ɔva prodyuz. Dɛn tin ya kin kɔntrol di inflamɛns.
- Anakinra (Kinerɛt) ɛn ɔda pipul dɛn.
- Kanakinumab (Ilaris) we de na di bɔdi.
- Rilonacept (Arcalyst) we de wok fɔ di kɔmni.
Apat frɔm dɛn tin ya, yu dɔktɔ kin tɛl yu bak fɔ du ɔda tritmɛnt dɛn lɛk:
- We yu wɛr splint fɔ mek yu jɔyn pen ɛn swel
- Fizik tɛrapi
- Mεdikeshכn dεm lεk NSAID, stεroyd, כ mεthotrexate fכ ridyus fiva εn inflameshn
- Ɛp fɔ yɛri fɔ di wan dɛn we nɔ de yɛri fayn
- Ɔpreshɔn if di jɔyn dɛn dɔn pwɛl
Aw yu go tek kia ɔf yusɛf?
Apat frɔm di tritmɛnt, fɔ mek smɔl chenj dɛn na yu layf kin ɛp fɔ kɔntrol di sayn dɛm.
- Avɔyd kol: If yu gɛt wan sik lɛk FCAS, kol wɛda kin mek yu sik dɛn wɔs. So tray fɔ de fa frɔm tin dɛn lɛk fɔ de na AC rum ɛn fɔ de na say dɛn we kol.
- Ridyus strɛs: Tin dɛn lɛk fɔ tink gud wan, fɔ du ɛksɛsayz fɔ blo dip, ɛn yoga kin ɛp bɔku pan dis.
- Wɛlbɔdi layf:
- Slip fayn fayn wan.
- It tin dɛn we gɛt fayn fayn tin dɛn fɔ it.
- Nɔ smok, rɔm, ɛn it tin dɛn we dɛn dɔn prosɛs.
Mɛsej we dɛn kin kɛr go na os
- CAPS na wan rare, jεnεtik kכndyushכn we de kכz fכ wan difεkt na di imyun sistεm.
- Di men sayn dɛm na di fiva we de kam bak, di skin we nɔ de it, ɛn di jɔyn dɛn we de pen.
- dis de kכz fכ wan mכtεshכn na di jin we dεn kכl
NLRP3. - I impɔtant fɔ no di sik ɛn bigin fɔ trit am kwik kwik wan fɔ mek dɛn nɔ pwɛl di yay, yes, ɛn ɔda pat dɛn fɔ ɔltɛm.
- If yu ɔ yu pikin gɛt ɛni wan pan dɛn sik ya, nɔ ɛva ignore dɛn ɛn go to yu dɔktɔ wantɛm wantɛm fɔ advays.
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