Yu dɔn ɛva notis se yu jɔyn dɛn kin bɛn pas yu padi dɛn, ɔ yu kin strɛch smɔl pas yu padi dɛn? Ɔ yu kin gɛt big brus we yu nak smɔl ples? Pan ɔl we yu kin tink se dɛn tin ya na nɔmal tin, i kin bi bikɔs ɔf wan sik we wi nɔr dɔn yɛri bɔku bɔt we dɛn kɔl Ehlers-Danlos Syndrome (EDS). Nɔ wɔri, lɛ wi tɔk bɔt am simpul wan.
Fɔ tɔk am simpul wan, wetin na Ehlers-Danlos Syndrome (EDS)?
Ehlers-Danlos Syndrome (EDS) na wan sik we de ambɔg wi bɔdi. I de mek di kɔnɛktiv tisu dɛn we de ol wi bɔdi togɛda wik. Tink bɔt am lɛk di glu we de ol tin dɛn lɛk wi bon, wi bɔdi, ɛn blɔd togɛda. Insay pɔsin we gɛt EDS, dis glu wik.
Dis kin mek yu jɔyn dɛn lɔs, yu skin kin tan ɛn brus izi wan, ɛn sɔntɛnde ivin yu blɔd vesel ɛn insay pat dɛn kin wik. Pan ɔl we naw nɔr gɛt mɛrɛsin fɔ dis, yu kin ebul fɔ kɔntrol yu sik dɛn fayn fayn wan ɛn liv nɔrmal layf.
Wetin na di men kayn EDS?
Dɛn gi am in nem to di tu dɔktɔ dɛn we bin fɔs tɔk bɔt di sik, we na Ehlers ɛn Danlos. Naw, 13 men kayn sik de. Pan ɔl we ɛni wan pan dɛn difrɛn smɔl, dɛn ɔl gɛt wan tin we kin mek dɛn gɛt wanwɔd: di jɔyn dɛn ɛn di skin kin wik. Lɛ wi tek wan luk pan di men kayn dɛn.
| EDS Tayp | Men ficha ɛn diskripshɔn |
|---|---|
| Haypamobil Ɛhlers-Danlɔs sindrom (hEDS) . | Dis na di kayn we we pipul dɛn kin gɛt mɔ. Di jɔyn dɛn kin bɛn pasmak. Dis kin mek yu gɛt sprain ɛn dislocation ɔltɛm. I kin mek bak di mɔsul ɛn bon dɛn gɛt pen fɔ lɔng tɛm. |
| Klasik Ɛhlers-Danlɔs sindrom (cEDS) . | Insay dis kayn, di skin kin rili smol, i kin rili elastik, ɛn i kin riliWik. Di skin na di ni ɛn ɛlb kin izi fɔ wund ɛn gɛt skata. di joyn dεm we sprein, flat fut, εn at valv prכblεm kin apin bak. |
| Vaskulεr Ehlers-Danlos sεndrכm (vEDS) . | Dis na wan kayn we we nɔ siriɔs, bɔt we nɔ kin apin so ɔltɛm. insay dis kכndishכn, di bכdi in bכdi vεsεl nεtwכk de wik, we de put di bכdi vεsul dεm εn insay כgan dεm (e.g., intestines) pan risk fכ rכp. |
| Ɔda kayn dɛn we nɔ bɔku | Ɔda kayn dɛn de we nɔ kin bɔku, lɛk Kyphoscoliotic (kEDS) ɛn Arthrochalasia (aEDS). dis kin gεt spεshal tin dεm lεk skכliosis, hip we de kכmכt we dεn bכn am, εn ay prכblεm. |
Wetin na di kɔmɔn sayn dɛm fɔ EDS?
Di sayn dɛm kin difrɛn difrɛn wan bay us kayn EDS yu gɛt, bɔt dis na sɔm pan di kɔmɔn sayn dɛm wae bɔrku pipul kin gɛt:
- Jɔyn dɛn we kin chenj pasmak: Imajin if yu kin bɛn yu big fut ɛn tɔch am to di ɔndasay na yu an, ɔ if yu kin bɛn yu ni dɛn bak, dat na sayn fɔ dis.
- Stretch skin: Yu kin strɛch yu skin away frɔm yu bɔdi ɛn lɛf am fɔ go, ɛn i snap bak na in ples lɛk rɔba band? Di skin kin ivin fil rili saf, lɛk velvet.
- Brus izi: Di skin kin rili brok. Ivin smɔl bɔmp kin mek big brus, skata, ɛn wund dɛn we kin tek lɔng tɛm fɔ wɛl.
Di impɔtant tin na dat, nɔr tink se yu gɛt EDS jɔs bikɔs yu gɛt wan ɔ tu pan dɛn sik ya. Bɔt if yu gɛt bɔku pan dɛn sik ya, i go fayn fɔ mek yu tɔk to dɔktɔ.
Ɔda tin dɛn we pɔsin kin si
Apat frɔm dɛn men tin ya, yu kin si tin dɛn bak lɛk:
- Prɔblɛm dɛn we gɛt fɔ du wit dɛn tit (krɔk tit, blɔd we de kɔmɔt na di gɔm) .
- Pen na di jɔyn dɛn
- Fɔ fil taya ivin afta yu dɔn slip fayn
- Trobul fɔ pe atɛnshɔn
- Ed de at
- Flat fut dɛn
- Di mɔsul dɛn kin wik, mɔ we di ples kol
- I nɔ izi fɔ kɔntrol di urine
- Diziz we pɔsin kin gɛt
- Prɔblɛm dɛn we de na di dijestiv sistɛm lɛk fɔ blo ɛn gɛt gastritis
Di sayn dɛm wae yu kin si pan yɔŋ pikin dɛm
If sɔm pikin dɛn gɛt EDS, yu kin si sɔm tin dɛn bak we dɛn de gro.
- Dilay pan motoka skil dɛm lɛk fɔ sidɔm, tinap, ɛn waka.
- Nɔ gɛt ayt ɔ wet we fit di ej.
- Insay sɔm brid dɛn we nɔ bɔku, yu kin si patikyula fes (big yay, smɔl chin, tin nos).
Wetin mek EDS kin apin?
Fɔ tɔk am simpul wan, EDS kin apin we wan prɔtin we dɛn kɔl kolagen na wi bɔdi nɔ de mek fayn fayn wan. Kכlagen, lεk aw a bin se, na di "glu" we de ol wi bon dεm, skin, εn כgan dεm togeda. We di trɛnk we dis glu gɛt go dɔŋ, ɔltin we dɛn kɔnɛkt kin wik ɛn i nɔ kin wok fayn.
EDS na wan sik we de mek pɔsin gɛt jɛnɛtiks . Dis min se i kin pas frɔm mama ɛn papa to pikin dɛn. If yu mama ɔr papa gɛt dis sik, yu gɛt chans fɔ gɛt am bak. Bɔt sɔntɛnde, nyu pɔrsin kin gɛt dis sik ɛn nɔr kin gɛt dis sik na di famili.
Aw dɔktɔ kin no bɔt dis?
We yu go to dɔktɔ bɔt dɛn sik ya, i go du fɔs fɔ chɛk yu bɔdi.
- Joyn egzamin: Dis go chɛk aw fa yu kin bɛn yu ni, ɛlb, ɛn finga dɛn. Yu kin tɔch yu big an to di ɔndasay na yu an? Yu kin bɛn yu smɔl finga pas 90 digri?
- Fɔ chɛk di skin: Dɛn kin chɛk fɔ si if di skin tayt, if i gɛt brus, ɛn if i gɛt skata.
- Famili histri: Dɛn go aks yu if yu ɔ ɛnibɔdi na yu famili dɔn gɛt dɛn sik ya bifo.
Bɔrku tɛm, de dɔktɔ kin gɛt aydia frɔm dis tɛst nɔmɔ, bɔt sɔmtɛm dɛn kin nid fɔ du mɔ tɛst fɔ no if pɔsin gɛt di sik.
Test fɔ kɔnfɔm
- Jɛnɛtik tɛst: Dɛn kin tek blɔd sɛmpul fɔ si if sɔm jin chenj dɛn de we kin mek pɔsin gɛt EDS.
- Echocardiogram: If dɛn tink se prɔblɛm de wit di at ɔ di blɔd vesel dɛn, dɛn kin du dis skan we nɔ gɛt pen fɔ chɛk aw di at de wok.
- CT skan ɔ MRI skan: Dɛn kayn skan ya kin nid fɔ si if ɛnitin de ambɔg di spayna, di nerv dɛn, ɔ di ɔgan dɛn we de insay di bɔdi.
- Skin biopsy: Dɛn kin tek smɔl pat pan di skin ɛn chɛk am ɔnda maykroskɔp fɔ chɛk fɔ si if kolagen nɔ de wok fayn.
Aw dɛn kin trit am ɛn manej am?
Wae yu dɔn no us kayn EDS yu gɛt, yu kin ebul fɔ manej di sayn dɛm wae gɛt fɔ du wit am. Yu kin nid ɛp frɔm difrɛn spɛshal pipul dɛn fɔ du dis. Fɔ ɛgzampul:
- Ɔtopɛdist
- Dɔktɔ we de mɛn pipul dɛn we gɛt skin
- Wan dɔktɔ we de mɛn di rumat
- Wan dɔktɔ we de mɛn di at
Di tritmɛnt we dɛn kin pik kin bi:
- Fizik tritmɛnt: Ɛksesaiz ɛn fyzikal tritmɛnt rili impɔtant fɔ mek di mɔsul dɛn strɔng ɛn fɔ mek di jɔyn dɛn nɔ stif. Simpul ɛksesaiz dɛn lɛk fɔ waka ɛn swim kin rili fayn.
- Ɔkupeshɔn tɛrapi: I de tich yu di tɛknik ɛn ikwipmɛnt dɛn we yu nid fɔ du ɛvride wok izi wan ɛn nɔ go ambɔg yu bɔdi.
- Di tin dɛn we yu kin yuz fɔ ɛp yu: Fɔ wɛr bres fɔ jɔyn, ɛn yuz tin dɛn lɛk wilchia if nid de.
- Di tin dɛn we de mek yu nɔ fil pen: Yu kin tek mɛrɛsin we yu dɔktɔ dɔn tɛl yu fɔ mek yu jɔyn pen.
- Ɔpreshɔn: If ɔda tritmɛnt dɛn nɔ ebul fɔ kɔntrol di sik, dɛn kin du ɔpreshɔn fɔ mek di jɔyn dɛn fayn. Bɔt bikɔs bɔku tɛm pipul dɛn we gɛt EDS kin delay fɔ wɛl, dɛn kin tek dis as las tin fɔ du.
Tin dɛn fɔ tink bɔt we yu de liv wit EDS
EDS na wan sik wae de kam wae yu de liv yu layf, so e fayn fɔ lan fɔ liv wit am.
- Protɛkt yu skin: Yuz sop dɛn we nɔ gɛt wan bɔt. Ɔltɛm, yu kin put tin fɔ protɛkt yusɛf frɔm di san we yu de go na do na di san. Wear protɛktiv pad na yu ni ɛn ɛlb.
- Nɔ spɔt we gɛt bɔku impak: Nɔ rɔn, jomp, ɛn kɔntakt spɔt. Nɔ es ebi ebi tin dɛn.
- Tek kia ɔf yu tit: Yuz tut brɔsh we gɛt sɔft brist.
- Mental wɛl bɔdi: Fɔ liv wit dis sik kin mek yu fil fayn, so aks fɔ ɛp frɔm pɔsin we de gi advays ɔ jɔyn sɔpɔt grup wit pipul dɛm wae gɛt di sem maynd.
If yu de tink bɔt fɔ gɛt famili, yu kin aks fɔ ɛp frɔm pɔsin we de advays yu bɔt yu jɛnɛtiks fɔ no bɔt yu risk fɔ gɛt pikin we gɛt dis sik.
Mɛsej we dɛn kin kɛr go na os
- Ehlers-Danlos Syndrome (EDS) na wan jεnεtik kכndyushכn we de wik di bכdi in kכnektiv tisu dεm.
- Di men sayn dɛm na we di jɔyn dɛn kin bɛn pasmak, di skin kin strɛch, ɛn i kin izi fɔ mek i brus.
- Pan ɔl we no kɔmplit mɛrɛsin nɔ de fɔ dis, dɛn kin ebul fɔ kɔntrol di sik dɛn fayn fayn wan bay we dɛn de trit dɛn bɔdi, mɛrɛsin, ɛn chenj dɛn layf.
- If yu gɛt dɛn kayn sik ya, nɔr frayd fɔ go to dɔktɔ fɔ advays. Kɔrɛkt diagnosis ɛn mɛnejɛmɛnt na di ki fɔ gɛt wɛlbɔdi layf.
- Yu kin liv nɔrmal layf wit bɔrku kayn EDS. Di tin we impɔtant pas ɔl na fɔ wok togɛda wit yu mɛdikal tim.
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