Yu dɔn ɛva fil lɛk se yu jɔyn dɛn kin chenj pas ɔda wan dɛn? Sɔntɛm yu kin bɛn yu finga dɛn bak di we we nɔ kɔmɔn, ɔ yu skin kin fil se i strɛch pas aw i kin fil. Pan ɔl we dɛn tin ya kin tan lɛk nɔmal tin, sɔntɛnde, dɛn kin gɛt wan sik we dɛn kɔl Ehlers-Danlos Syndrome (EDS). Nɔ wɔri, dis na sɔntin we bɔku pipul dɛn nɔ yɛri bɔt, so tide wi go tɔk bɔt am na simpul we we yu go ɔndastand.
Fɔ tɔk am simpul wan, wetin na Ehlers-Danlos Syndrome (EDS)?
Tink bɔt wi bɔdi lɛk bildin we dɛn mek wit brik. Dɛn brik ya (dat na wi bɔdi ɔgan dɛn, bon dɛn, ɛn skin) na mɔta kin ol dɛn togɛda. Semweso, di ‘mכta’ we de ol di pat dεm na wi bכdi tכgeda εn mek dεn strכng dεn kכl am k כnektiv tisu . Dɛn tin ya de ɔlsay na wi bon, katilej, skin, ɛn blɔd vesel.
Ehlers-Danlos Syndrome (EDS) na wan jεnεtik dizayd we de mek di kכnektiv tisu wik. di men tin we kin mek i apin na we di kolagen, we na wan protin we impɔtant fɔ mek di kɔnektiv tisu strɔng. I tan lɛk mɔta miks we nɔ gɛt siment. Dis kin mek di jɔyn dɛn lɔs, di skin kin strɛch tumɔs, i kin brus izi wan, ɛn sɔntɛnde ivin di blɔd vesel ɛn di ɔgan dɛn we de insay kin wik.
Dis na wan sik we de kɔmɔt na di jɛnɛtiks we de rɔn na famili. Bɔt, no patikyula mɛrɛsin nɔ de fɔ am yet. Bɔt di bɛst tin na fɔ ebul kɔntrol ɛn kɔntrol di sik dɛn ɛn liv nɔmal layf.
Wetin na di men kayn EDS?
Dɛn gi EDS in nem to di tu dɔktɔ dɛn we bin fɔs tɔk bɔt am. Naw, 13 men kayn dɛn de. Pan ɔl we ɛni wan pan dɛn difrɛn smɔl, dɛn ɔl gɛt wan tin we kin mek dɛn gɛt: di jɔyn dɛn ɛn di tin dɛn we de na di skin kin wik. Lɛ wi tek wan luk pan di kayn dɛn we kɔmɔn pas ɔl.
| EDS tayp | Tɔk bɔt |
|---|---|
| Haypamobayl EDS (hEDS) . | Dis na di kayn we we dɛn kin yuz mɔ . Di jɔyn dɛn kin tu fleksibul. Dis kin mek yu gɛt sprain ɛn strɛs ɔltɛm. I kin mek bak di mɔsul ɛn bon dɛn gɛt pen fɔ lɔng tɛm. |
| Klasik EDS (cEDS) we dɛn kɔl . | Insay dis kayn we, di skin kin rili tan, i kin strɛch, ɛn i kin dilik. di skin na di say dεm lεk di kכn εn di εlbo dεm kin brus izi wan εn ska dεm kin fכm. Joint swelling, flat feet , ɛn at valv prɔblɛm kin apin bak. |
| Vaskulεr EDS (vEDS) . | Dis na wan kayn we we rili denja ɛn we nɔ kin apin so ɔltɛm . If na so i bi, di blɔd vesel sistɛm kin wik. fכ dat, di risk de fכ di bכdi vεsul dεm εn di insay כgan dεm (e.g. di intestines, uterus) fכ rכp/bכst. |
| Ɔda kayn dɛn we nɔ bɔku | כda kayn dεm de we nכ kin apin, lεk Kyphoscoliotic EDS (kEDS) εn Arthrochalasia EDS (aEDS), we dεn kin kכl di spayna kכva, di hip kin kכmכt we dεn bכn am, εn di skin kin sכft pasmak. |
Wetin na di kɔmɔn sayn dɛm fɔ EDS?
Di sayn dɛm kin difrɛn difrɛn wan bay di kayn EDS wae yu gɛt, bɔt na dɛn kɔmɔn sayn dɛm wae bɔrku pipul kin gɛt.
- Jɔyn dɛn we kin chenj pasmak: Fɔ ɛgzampul, yu kin ebul fɔ kɔl yu big an ɛn rɔb am na di bak pat pan yu an, ɔ yu kin bɛn yu ni dɛn bak. Sɔm pipul dɛn kin kɔl dis ‘dɔbul-jɔyn’.
- Stretch skin: Yu kin pul yu skin kɔmɔt na yu bɔdi, ɛn we yu lɛf am, i go snap bak na in ples. I kin rili smol bak, lɛk velvet.
- Fragile skin: Di skin kin tɔn blu ɛn brus ivin afta dɛn dɔn blo am smɔl. If yu wund, i kin tek lɔng tɛm fɔ mek i wɛl. Ska dɛn kin fɔm izi wan.
Di impɔtant tin na dat nɔto ɔlman we gɛt wan ɔ tu pan dɛn sik ya gɛt EDS. Bɔt if una gɛt sɔm pan dɛn sik ya togɛda, i go fayn fɔ mek una go to dɔktɔ ɛn tɔk to dɛn.
Dis kin apin bak:
- Prɔblɛm dɛn we gɛt fɔ du wit di tit (we dɛn kin pul di tut, we di gam kin blɔd) .
- Pen na di jɔyn dɛn
- Fɔ fil taya pasmak ivin afta yu dɔn slip fayn
- I nɔ kin izi fɔ mek yu pe atɛnshɔn to yu
- 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
If pikin dɛn gɛt EDS, i kin afɛkt di we aw dɛn de yuz dɛn motoka lɛk fɔ waka ɛn sidɔm.I kin delay ɛn yu nɔ kin gɛt ayt we fit yu ej.
Aw fɔ no di sik?
We yu ripɔt bɔt dɛn kayn sik ya, yu dɔktɔ go tek tɛm luk yu fɔs.
- Dɛn go si aw fa yu go ebul fɔ bɛn yu ni, yu ɛlbow, ɛn yu fut finga dɛn.
- Dɛn go chɛk fɔ si aw yu skin strɛch ɛn if ɛni skata ɔ brus de.
- Aks if ɛnibɔdi na yu famili gɛt dɛn sik ya.
Bɔrku tɛm, dɛn kin no di kayn dɛn lɛk hEDS wit dis fyzikal ɛgzam nɔmɔ. Bɔt sɔntɛnde, dɛn kin nid fɔ du mɔ tɛst fɔ no if pɔsin gɛt di sik ɛn fɔ no di rayt kayn sik.
- Jɛnɛtik tɛst: Dɛn kin tek blɔd sɛmpul fɔ si if jin chenj dɛn de we kin mek pɔsin gɛt EDS.
- Echocardiogram: Na sawnd wev tɛst fɔ chɛk if prɔblɛm de wit di at ɛn di blɔd vesel dɛn.
- CT skan ɔ MRI skan: Dɛn skan ya kin ɛp fɔ si aw di spayna ɔ di ɔgan dɛn we de insay di bɔdi de.
- 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.
Tritmɛnt ɛn manejmɛnt
Wae yu dɔn no us kayn EDS yu gɛt, yu kin tɔk to yu dɔktɔ bɔt aw fɔ kɔntrol yu sik dɛn. Yu kin nid bak fɔ go to difrɛn spɛshal pipul dɛn.
- Ɔtopɛdist
- Dɔktɔ we de mɛn pipul dɛn we gɛt skin
- Wan dɔktɔ we de mɛn di rumat
Na sɔm pan di men we dɛn fɔ trit am:
- Fizik tritmɛnt: Dis rili impɔtant fɔ mek di mɔsul dɛn strɔng ɛn fɔ mek di jɔyn dɛn nɔ stif. Ɛksesaiz we nɔ gɛt bɛtɛ impak lɛk fɔ waka ɛn swim kin fayn.
- Ɔkupeshɔn tɛrapi: Yu kin lan bɔt di tɛknik ɛn divays dɛn fɔ mek i izi fɔ du ɛvride. Yu go gɛt advays bɔt aw fɔ ridyus strɛs na yu jɔyn dɛn.
- Di tin dɛn we yu kin yuz fɔ ɛp yu: Yu kin nid bres fɔ mek yu jɔyn dɛn nɔ muv ɔ yu kin nid wilchia fɔ ɛp yu fɔ go rawnd.
- Di tin dɛn we de mek pɔsin fil pen: Fɔ mek yu jɔyn pen, yu kin tek ɔdinari mɛrɛsin dɛn we de mek yu fil pen ɔ if nid de, yu kin tek mɛrɛsin dɛn we strɔng pas dat we dɔktɔ gi yu.
- Ɔpreshɔn: Dɛn kin yuz ɔpreshɔn fɔ mek di jɔyn dɛn we kin afɛkt bɔku tɛm ɛn we dɛn nɔ kin ebul fɔ kɔntrol wit ɔda tritmɛnt dɛn. 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
Fɔ liv wit EDS min se yu fɔ tek smɔl ɛkstra kia fɔ yu bɔdi. Dɛn tin ya kin ɛp yu fɔ avɔyd aksidɛnt.
- Nɔ du spɔt dɛn we de mek yu strɛs:Nɔ du kɔntakt spɔt ɛn ɛksesaiz dɛn we de put bɔku prɛshɔn pan di jɔyn dɛn, lɛk fɔ rɔn.
- Nɔ es wet: We yu es wet, dat kin mek yu jɔyn dɛn swɛt ɛn wund.
- Protɛkt yu skin: Yuz sop dɛn we nɔ gɛt wan bɔt. Put tin we de protɛkt yu frɔm di san ɛvride. Wear protɛktiv pad na say dɛn lɛk ni ɛn ɛlb.
- Tek kia ɔf yu tit: Yuz tut brɔsh we gɛt sɔft brist.
- Mental hεlth: Fɔ liv wit lɔng tɛm kכndyushכn lεk dis kin mek yu fil fayn. We yu tɔk to pɔsin we de gi advays ɔ jɔyn sɔpɔt grup wit pipul dɛn we gɛt di sem maynd, dat kin rili ɛp yu.
If yu de tink bɔt fɔ mek yu gɛt famili, yu kin tɔk to pɔsin we de gi advays bɔt yu jɛnɛtiks fɔ ɔndastand di prɔblɛm we kin mek yu pas dis sik to yu pikin dɛn.
Mɛsej we dɛn kin kɛr go na os
- Ehlers-Danlos Syndrome (EDS) na wan jenɛtik disɔda we de mek di bɔdi in kɔnektiv tisu dɛn wik.
- Di men sayn dɛm na di joyn dɛm we kin fleksibul pasmak, di skin kin strɛch, ɛn i kin izi fɔ mek yu brus.
- Pan ɔl we no patikyula 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 tink se yu gɛt dɛn sik ya, nɔ disayd fɔ du sɔntin bay di intanɛt, bɔt fɔ tru, go to yu dɔktɔ fɔ advays.
- Yu kin liv fayn layf bay wae yu de woke klos wit yu dɔktɔ ɛn kia fɔ yu bɔdi.
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