Yu dɔn ɛva notis se yu jɔyn dɛn kin bɛn ɛn muf smɔl pas yu padi dɛn? Ɔ yu kin brus ɛn brus ivin we yu nak smɔl ples? Yu kin tink se, "O... na so mi bɔdi tan, a dɔn tan lɛk dis frɔm we a smɔl." Bɔt sɔmtɛm dɛn tin ya kin bi sayn fɔ wan sik we wi nɔ kin tɔk bɔt bɔku, bɔt wi rili nid fɔ no bɔt. Tide wi go tɔk bɔt wan pan dɛn kayn sik ya, we na Ehlers-Danlos Syndrome, ɔ EDS fɔ shɔt tɛm.
Fɔ tɔk am simpul wan, wetin na Ehlers-Danlos Syndrome (EDS)?
Tink bɔt wi bɔdi lɛk bildin we dɛn bil fayn fayn wan. Ɔltin we de na dis bildin, ivin di brik dɛn, di wɔl dɛn, ɛn di ruf, dɛn kin ol am togɛda ɛn dɛn kin yuz simen fɔ ol am tranga wan. Semweso, wi bɔdi in ɔgan dɛn, bon dɛn, mɔsul dɛn, ɛn skin kin kɔnɛkt, sɔpɔt, ɛn ol strɔng bay wan spɛshal nɛtwɔk we gɛt tisu dɛn. Wi kin kɔl dɛn kɔnektiv tisu ya .
di men hiro fכ dis kכnektiv tisu na wan protin we dεn kכl kolagen . I tan lɛk siment. Dis kolagen na in de gi wi skin, joyn, ɛn blɔd vesel dɛn trɛnk ɛn stebul.
Naw, na dis kin apin na pɔrsin wae gɛt Ehlers-Danlos Syndrome (EDS) in bɔdi: Wan chenj de na di jɛnɛtiks pan di we aw dɛn bɔdi de mek dis prɔtin we dɛn kɔl kolagen. So di kolagen we dεn prodyuz nכ strכng inof, lεk ol siment. So wetin kin apin? I tan lεk se di bildin de wik, di kכnektiv tisu na di bכdi de wik. So i kin afɛkt bɔku say dɛn na di bɔdi.
- Blɔd ɛn blɔd vesel dɛn
- Bɔn dɛn (bɔn dɛn) .
- Cartilage (di smol smol tisu bitwin bon dεm) .
- Bɔmp
- Jɔnkshɔn dɛn (jɔyn dɛn) .
- Mɔsul dɛn
- Kanda
Men kayn EDS de?
Yɛs, EDS nɔto di sem fɔ ɔlman. Dɛn kin sheb dis sik to 13 men kayn tin bay aw i kin afɛkt di bɔdi ɛn di sayn dɛm wae i kin kam wit. Bɔt tide wi go tɔk bɔt sɔm pan di kayn we dɛn we yu fɔ no mɔ bɔt.
| EDS tayp nem | Wan shɔt introdukshɔn |
|---|---|
| Haypamobayl EDS | Dis na di kayn we we pipul dɛn kin gɛt mɔ. Dɛn jɔyn dɛn kin ebul fɔ chenj ɛn dɛn nɔ kin izi fɔ biliv. Dɛn kin fil lɛk se dɛn ‘lɔk insay’. di joyn dεm kin mek ‘klik’ sawnd bכku tεm εn i kin izi fכ snap. |
| Klasik EDS we dɛn kɔl | Dis tan lɛk di kayn we we wi dɔn tɔk bɔt, bɔt i kin afɛkt di skin pas di jɔyn dɛn. Di skin kin rili tan, i kin tan lɛk rɔba, ɛn i kin izi fɔ rɔtin ɛn wund. |
| EDS we tan lɛk klasical | As di nem sho, i rili fiba Klasik EDS, bɔt smɔl difrɛns de pan di sayn dɛm. Na dɔktɔ nɔmɔ go ebul fɔ no bɔt dɛn tin ya. |
| EDS we de na di kadyak-valvul | Dis kin afɛkt di at ɛn di at valv dɛm, ɛn i kin mek yu gɛt sɔm sayn dɛm na di skin ɛn di jɔyn dɛm. |
| Vaskulεr EDS | Dis na wan kayn tin we nɔ kin apin so ɔltɛm ɛn i kin denja. I kin afɛkt di blɔd vesel ɛn di ɔgan dɛn we de insay di bɔdi pas di jɔyn dɛn. Dɛn wɔl dɛn wik ɛn i kin izi fɔ mek dɛn bɔs ɔ brok. Dis na tin we pɔsin fɔ pe atɛnshɔn to kwik kwik wan. |
Wetin na di kɔmɔn sayn dɛm fɔ EDS?
Naw yu kin de tink se, "A nɔ no if a gɛt dis bak." Lɛ wi tek wan luk pan de sayn dɛm wae kin kam wit dis sik. Bɔt mɛmba wan tin, jɔs bikɔs yu gɛt wan ɔ tu pan dɛn sik ya nɔ min se yu gɛt EDS . Dɛn kin si dɛn sayn ya bak pan ɔda sik dɛn. So, di bɛst tin fɔ du na fɔ go to dɔktɔ if yu gɛt ɛni dawt ɛn mek yu no if yu gɛt di sik .
| Di sayn we de sho se di sik de | Fɔ tɔk am simpul wan... |
|---|---|
| Hypermobile joyn dɛn | Jɔyn dɛn kin bɛn bɔku pas aw i kin bɛn. Sɔm kin kɔl dɛn ‘dɔbul jɔyn’. Jɔyn dɛn lɛk di sholda, di ni, ɛn di finga dɛn de muf ɔltɛm. |
| Skin we strɛch, we smol | Di skin rili smol, lɛk velvet. Ɛn lɛk bɔl we gɛt pizza dɔti, yu kin strɛch am lɛk aw yu want, ɛn i kin go bak usay i bin de we yu lɛf am. |
| Fragile skin ɛn skata dɛn | Ivin smɔl wund kin tek lɔng tɛm fɔ wɛl. I kin skata izi wan, ɛn sɔntɛnde di skata kin tan lɛk tin ɛn i kin tan lɛk se in kɔlɔ dɔn chenj. |
| Brus izi wan | Sɔntɛnde, blu brus kin apia na di bɔdi ivin we dɛn nɔ bit am ɛnisay. Ilɛksɛf yu nak am jɔs smɔl sɔnsay, i go tɔn blu. |
| Pen na di jɔyn ɛn mɔsul dɛn | Pen kin de ɔltɛm, lɛk fɔ pen, na di jɔyn ɛn mɔsul dɛm. Dis pen de kam ɛn go. |
| Taya we nɔ de dɔn | Fɔ fil taya ɛn nɔ gɛt layf ɔl di de ivin afta yu dɔn slip fayn. |
| Prɔblɛm dɛn we de na di dijestiv sistɛm | Yu kin gɛt prɔblɛm wit yu bɛlɛ, yu kin blo, yu kin gɛt bɛlɛ, ɛn ɔda tin dɛn Sɔm pipul dɛn kin gɛt tin dɛn lɛk Irritable Bowel Syndrome (IBS). |
| Risk fɔ gɛt Ɛnia | di risk fכ hεnia de hכy biכs di kכnektiv tisu we de rawnd di mכsul dεm wik. |
Wetin kin mek pɔsin gɛt EDS? Yu tink se i kin pas?
Nɔ, EDS nɔto sɔntin we pɔsin kin pas frɔm wan pɔsin to ɔda pɔsin . Na wan sik we pɔsin kin gɛt we i kam pan jɛnɛtiks . Dat min se na bikɔs ɔf di chenj we wi jɛnɛtiks chenj na wi jin. dis difεkt de apin na di jin dεm we de instrכkt wi fכ prodyuz di kolagen protin we wi bin tכk bכt fכs.
Masta sabi pipul dεm dכn no pas 20 difrεn jεnεtik vεryushכn dεm we de mek EDS. Us jεnεtik vεryushכn yu gεt de sho di kayn EDS εn di simptom dεm we yu de gεt.
Sɔm kayn EDS kin kɔmɔt frɔm mama ɛn papa to pikin dɛn. Dis min se if ɛni wan pan dɛn mama ɛn papa gɛt di sik, chans de fɔ mek di pikin dɛnsɛf gɛt am. Bɔt sɔm kayn dɛn kin apin bak na bɔdi, we nɔ gɛt ɛni famili histri.
If pɔsin na yu famili gɛt dis sik, ɔ if yu gɛt di sem kayn sik, i rili impɔtant fɔ tɔk to dɔktɔ ɛn if nid de, go to advays bɔt yu jɛnɛtiks .
Wetin na di prɔblɛm dɛn we kin apin we pɔsin gɛt EDS?
di komplikashכn we kכmכn pan dis kכndyushכn na dislכkeshכn . Dis kin rili mek yu fil pen. Sɔntin de we rili impɔtant we wi ɔl nid fɔ mɛmba na ya.
If yu pul yu jɔyn, nɔ ɛva tray fɔ tay am bak yusɛf ɔ mek ɔda pɔsin du am! Dis go jɔs mek di jɔyn, di tisu dɛn we de rawnd am, ɛn di nerv dɛn pwɛl mɔ. Di bɛst tin fɔ du na fɔ go na di ɔspitul Imejɛnsi Dipatmɛnt (ETU) we de nia yu kwik kwik wan.
Insay sɔm kayn bad bad tin dɛm, lɛk vaskul EDS, kɔmplikeshɔn kin apin we kin mek pɔsin in layf de pan denja. Fɔ ɛgzampul, di blɔd vesel dɛn kin bɔs, ɛn dis kin mek blɔd kɔmɔt insay di bɔdi ɛn siriɔs tin dɛn lɛk strok .
Ɔda prɔblɛm dɛn we kin apin kin bi:
- Skɔliosis we de mek pɔsin gɛt sik
- Prɔblɛm dɛn we gɛt fɔ du wit di at valv
- Tit ɛn gɔm prɔblɛm dɛn
- Limb dɛn we dɛn butu
Tritmɛnt ɛn manejmɛnt fɔ EDS
Fɔs, no mɛrɛsin nɔ de fɔ EDS yet. Bɔt nɔ wɔri. Yu kin kɔntrol yu sik, nɔr gɛt prɔblɛm, ɛn liv nɔrmal, kwaliti layf. De men gol fɔ tritmɛnt na fɔ kɔntrol yu sayn dɛm.
- Fizik tritmɛnt: Dis rili impɔtant. Ɛksesaiz we de mek di mɔsul dɛn we de rawnd di jɔyn dɛn strɔng kin ɛp fɔ mek di jɔyn dɛn nɔ stif ɛn nɔ pen.
- We yu wɛr spɛshal bres:Yu dɔktɔ kin tɛl yu fɔ yuz spɛshal bres fɔ gi ɛkstra sɔpɔt ɛn fɔ protɛkt di jɔyn dɛn we wik.
- Speshal kia fɔ di skin: Bikɔs di skin rili sɛnsitiv, i impɔtant fɔ protɛkt am bay we yu de yuz sanskrin we yu de go na do na di san ɛn yuz sop dɛn we nɔ gɛt wan bɔt ɛn we nɔ de mek yu vɛks.
Dɔn bak, i bɛtɛ fɔ lɛ yu nɔ de nia sɔm tin dɛn we kin pwɛl di jɔyn dɛn.
- Kɔntakt spɔt
- Ɛksesaiz we gɛt ay impak (fɔ rɔn, jomp, ɛn ɔda ɛgzampul dɛn we gɛt ay impak) .
- We yu de lif di wet
Dis nɔ min se yu nɔ go ebul fɔ ɛksesaiz atɔl. Yu kin tɔk to yu dɔktɔ bɔt ɛksesaiz dɛn we fayn fɔ yu bɔdi ɛn we nɔ go pwɛl yu jɔyn dɛn, lɛk fɔ swim ɔ fɔ rayd baysikul.
Fɔ liv wit EDS kin tranga sɔntɛnde. Pen ɛn taya ɔltɛm kin mek yu at pwɛl. Dat na nɔmal tin. Bɔt yu kin ɔndastand wetin yu nɔ ebul fɔ du, mek di chenj dɛn we yu nid, ɛn kɔntinyu fɔ du di tin dɛn we yu lɛk. Lisin to yu bɔdi. If yu notis ɛni chenj na yu sik ɔr aw yu de fil, nɔr frayd fɔ tɔk to yu dɔktɔ.
Mɛsej we dɛn kin kɛr go na os
- Ehlers-Danlos Syndrome (EDS) na wan jεnεtik kכndyushכn we de kכz we di kolagen protin nכ de.
- Di men sayn dɛm na fɔ bɛn pasmak ɛn jomp bɔku tɛm na di jɔyn dɛm, di skin kin elastik, ɛn i kin izi fɔ mek i brus.
- Pan ɔl we dɛn nɔ go ebul fɔ mɛn am ɔl, dɛn kin ebul fɔ kɔntrol di sik dɛn fayn fayn wan if dɛn de trit dɛn bɔdi fayn, chenj dɛn layf, ɛn dɛn gi dɛn di rayt advays.
- If yu pop jɔyn, nɔ ɛva tray fɔ fiks am yusɛf, bɔt go na ɔspitul imejensi rum (ETU) wantɛm wantɛm.
- If yu gɛt dɛn sik ya ɔ yu gɛt famili histri, i rili impɔtant fɔ go to yu dɔktɔ fɔ no di kɔrɛkt tin ɛn advays.
💬 Comments (0)
No kɔmɛnt nɔ de yet. Ad yu kɔmɛnt ya fɔ di fɔs tɛm.
Ad yu kɔmɛnt