Bɔku tɛm yu jɔyn dɛn kin lɔs? Yu skin kin brok izi wan? Yu tink se na di sik we dɛn kɔl Ehlers-Danlos Syndrome?

Sɔntɛnde yu kin fil lɛk se yu jɔyn dɛn na yu an ɛn yu fut kin muf tumɔs, lɛk se dɛn dɔn lɔs? Ɔ yu kin brus ɔ tɔn blu izi wan if yu tɔch am smɔl? Yu kin de tink se, "O, a go mɔs bi smɔl klɔm." Bɔt nɔto jɔs dat. E kin bi bikɔs ɔf wan sik wae dɛn kɔl Ehlers-Danlos Syndrome (EDS) , wae nɔr kin bɔrku, bɔt i impɔtant fɔ no bɔt. Lɛ wi tɔk mɔ bɔt dis tide .

Wetin na di sik we dɛn kɔl Ehlers-Danlos Syndrome (EDS)?

Fɔ tɔk am simpul wan, Ehlers-Danlos syndrome na wan sik we de afɛkt di kɔnektiv tisu dɛn na wi bɔdi. Naw yu kin de wɔnda wetin na di kɔnɛktiv tisu dɛn. Imajin se wi bɔdi tan lɛk os, ɛn kɔnektiv tisu dɛn tan lɛk simen ɛn mɔta we de ol tin dɛn togɛda, we de gi dɛn trɛnk, lɛk wɔl ɛn ruf. Dɛn de ɔlsay na wi bɔdi – dɛn de ɛp fɔ ol wi ɔgan dɛn togɛda, ɛn dɛn de ɛp fɔ kɔnɛkt wi bɔdi pat dɛn togɛda.

dis kכnektiv tisu de mek wit tu men kayn protin dεm: kolagen εn εlastin . insay EDS, wi bכdi nכ kin ebul fכ mek dis protin we dεn kכl kolagen fayn fayn wan. Wetin kin apin na dat pɔsin we gɛt EDS gɛt wik kolagen. dis min se dεn kכnektiv tisu nכ strכng כ tayt lεk aw i fכ bi.

Dis kכndyushכn kin afekt εni kכnektiv tisu na yu bכdi. Fɔ ɛgzampul:

• Fɔ yu katilej
• To di bon dɛn
• To di blɔd
• To tisu we gɛt fat

Dipen pan usay EDS de afɛkt yu kɔnɛktiv tisu, yu kin gɛt sɔm sayn dɛn lɛk:

• Na yu skin
• Na di jɔyn dɛn
• Insay di mɔsul dɛn
• Insay blɔd vesel dɛn

Di impɔtant tin na dat Ehlers-Danlos syndrome na wan sik we de mek pɔsin gɛt jɛnɛtiks . Dis min se dɛn kin pas am tru jɛnɛreshɔn dɛn. If pɔsin na yu famili – dat na, pɔsin we de nia yu, lɛk yu mama, papa, brɔda ɛn sista, granpa ɛn granma – gɛt dis sik, i rili impɔtant fɔ mek yu go to dɔktɔ ɛn mek dɛn chɛk yu.

Sɔm kayn sik de we dɛn kɔl Ehlers-Danlos syndrome?

Yɛs, dɔktɔ dɛn kin sheb di sik we dɛn kɔl Ehlers-Danlos syndrome to lɛk 13 men kayn sik dɛn, i kin dipen pan aw di sik kin afɛkt di bɔdi ɛn us sayn dɛn i kin kam wit.

di kayn dεm we dεn kin kכmכn kin mek di joyn dεm we lכs כ nכ stebul εn skin we rili dilik εn i izi fכ brus. Bɔt sɔm kayn tin dɛn de we nɔ kin apin so ɔltɛm we kin mek pɔsin in layf de pan denja. In patikyula , vaskulεr Ehlers-Danlos sεndrכm — di kayn EDS we de afekt di bכdi vεsul dεm — kin bi sכm mכr denja.

Yu dɔktɔ go ɛksplen to yu us kayn EDS yu gɛt ɛn us tritmɛnt yu nid.

Aw dis sik kin kɔmɔn?

Masta sabi bukman dɛn se, pan avɛj, na lɛk wan pan ɛvri 5,000 pipul dɛn kin gɛt di sik we dɛn kɔl Ehlers-Danlos syndrome. Dis min se pipul dɛn de na Sri Lanka we gɛt dis sik, bɔt dɛn nɔ kin no bɔt am.

Wetin na di sayn dɛm wae de sho se yu gɛt Ehlers-Danlos syndrome?

Pan ɔl we ɛni kayn EDS gɛt in yon spɛshal sayn dɛn, sɔm kɔmɔn sayn dɛn de we pipul dɛn kin si. Lɛ wi tek wan luk pan wetin dɛn bi:

• Hypermobile joints: Dis na wan sik wae kin kam pan bɔrku pipul dɛm. Yu jɔyn dɛn kin fil lɛk se dɛn dɔn lɔs ɛn dɛn nɔ kin stebul. Sɔm pipul dɛn kin bɛn ɛn twist dɛn finga, ɛlb, ɛn ni di we we nɔ kɔmɔn pas ɔda wan dɛn. Tink bɔt am, yu go dɔn si pipul dɛn de bɛn dɛn bɔdi lɛk aw dɛn kin du na di sɛrks, ɛn sɔm pipul dɛn kin gɛt da abiliti de bikɔs ɔf EDS. Bɔt dis nɔ kin bi gud tin ɔltɛm, bikɔs i izi fɔ mek di jɔyn dɛn snɛp.
• Di skin rili saf, tan, ɛn i kin strɛch pas aw i kin strɛch: Di skin kin strɛch lɛk rɔba band. Sɔm pipul dɛn skin kin fil rili smol we yu tɔch am, lɛk velvet. Ɛn sɔntɛnde di skin kin rili tan.
• Brus izi, tɔn blu ɔltɛm: If yu gɛt big brus ɛn brus ivin afta yu dɔn gɛt smɔl bɔmp ɔ bɔmp, dat na sayn bak fɔ dis. Sɔm pipul dɛn nɔ kin ivin ebul fɔ no wetin mek dis kin apin.
• Wund dɛn kin tek lɔng tɛm we nɔ kɔmɔn fɔ wɛl, ɛn skata kin apia insay strenj shep dɛn: Ivin smɔl wund dɛn kin tek lɔng tɛm fɔ wɛl. Sɔntɛnde, di skata dɛn kin tan lɛk tin we rili tan lɛk sigrɛt pepa skata.
• Joyn ɛn mɔsul dɛn pen: Dis na prɔblɛm bak we bɔku pipul dɛn kin gɛt. Dɛn kin fil pen ɛn taya ɔltɛm.
• Taya: Fɔ fil taya ɔltɛm, ilɛksɛf yu slip bɔku.
• I nɔ izi fɔ pe atɛnshɔn: I nɔ izi fɔ pe atɛnshɔn pan wan wok, lɛk se di bren de fɔg.

If yu gɛt wan ɔ mɔ pan dɛn sayn ya, i go fayn fɔ mek yu go to dɔktɔ.

Wetin kin mek pɔsin gɛt di sik we dɛn kɔl Ehlers-Danlos syndrome?

Di men rizin fɔ dis na we di jɛnɛtiks chenj . fכ si am simpul wan, we wi sεl dεm divayd εn nyu sεl dεm de fכm, di infכmeshכn we de insay wi ``DNA'' de kכpi. if sכm chenj, difεkt, כ damej de na di ``DNA'' sikεns we dεn de kכpi dis, dεn kכl dat jεnεtik mכtεshכn. Jɔs lɛk we dɛn muv smɔl lɛta na wan rɛsipɛkt, di it we de te ɛn aw i tan kin chenj.

insay EDS, dis jεnεtik mכtεshכn de mek di bכdi nכ de mek wan protin we dεn kכl kolagen . Kɔlagen na di men tin we de gi trɛnk to wi skin, jɔyn dɛn, ɛn blɔd vesel dɛn. We dɛn nɔ mek am fayn, ɔl di prɔblɛm dɛn we wi dɔn tɔk bɔt kin apin.

Masta sabi bukman dɛn dɔn no se i pas 20 difrɛn difrɛn jin dɛn we kin mek pɔsin gɛt EDS. di patikyula jin mכtεshכn we yu gεt de sho us pat dεm na yu bכdi de afekt. Bɔt sɔntɛnde, dɔktɔ dɛn nɔ kin ebul fɔ no ustɛm di jin chenj we de mek pɔsin gɛt EDS.

Udat de pan big risk fɔ gɛt dis?

Sɔm kayn EDS dɛn kin gɛt frɔm dɛn mama ɛn papa . Dis min se if mama ɛn papa gɛt dis sik, di jenɛtik muteshɔn kin pas to dɛn pikin dɛn. Bɔt sɔm kayn dɛn na somatik – we min se pɔsin kin divɛlɔp am we ɔda pɔsin na di famili nɔ gɛt am, ɛn dɛn nɔ kin pas frɔm jɛnɛreshɔn to jɛnɛreshɔn.

If wan ɔ yu tu mama ɛn papa we bɔn yu gɛt EDS, yu de pan denja fɔ gɛt dis sik. Dɔn bak, if yu gɛt EDS, yu pikin dɛn kin pas di jin we de mek i gɛt am.

Fɔ no mɔ bɔt dis, yu kin aks fɔ advays bɔt yu jɛnɛtiks . Di wan dɛm wae kin gi advays bɔt jɛnɛtiks kin ɛksplen di risk wae kin kam wae yu gɛt dɛn kayn sik ya frɔm yu, ɔr kin pas am to yu pikin dɛm.

Wetin na di kɔmplikeshɔn dɛm wae de kam wit Ehlers-Danlos syndrome?

Di prɔblɛm we pipul dɛn we gɛt EDS kin gɛt na dislɔkeshɔn , we na we di bon dɛn na wan jɔyn kin slip kɔmɔt na dɛn nɔmal pozishɔn.

Impɔtant: If yu ɛva tink se yu dɔn kɔmɔt na yu jɔyn, nɔ tray fɔ put am bak na in ples fɔ yusɛf. If yu du dat, dat kin mek yu gɛt mɔ prɔblɛm. Go na wan imejensi rum (ETU) wantɛm wantɛm. Sɔntɛnde, dɛn kin nid fɔ du ɔpreshɔn fɔ mek di jɔyn we dɔn pwɛl.

Sɔm kayn EDS, mɔ di vaskyuɛl Ehlers-Danlos syndrome we wi bin dɔn tɔk bɔt, kin mek pɔsin gɛt prɔblɛm dɛn we kin mek pɔsin in layf de pan denja. Dis kayn kin mek di blɔd vesel dɛn brok. Dis kin mek blɔd kɔmɔt insay di bɔdi, ɛn dis kin mek pɔsin gɛt prɔblɛm dɛn lɛk strok .

Pipul wae gɛt dɛn kayn EDS ya kin gɛt bɔrku risk fɔ mek dɛn ɔgan rɔp. di intestכn dεm εn di uterus fכ uman we gεt bεlε na di כgan dεm we kin brok mכst.

De kɔmplikeshɔn wae yu kin gɛt kin dipen pan di kayn EDS wae yu gɛt. Ɔda prɔblɛm dɛn we kin apin kin bi:

• di hat valv prכblεm (di valv dεm we de pכmp bכdi nכ de wok fayn).
• Sivεr kכva na di spayna (scoliosis).
• Tin we di kɔnia na di yay dɛn kin tan.
• Limb dɛn we dɛn butu.
• Tit ɛn gɔm prɔblɛm dɛn.

Aw dɛn kin no se di sik we dɛn kɔl Ehlers-Danlos syndrome?

Dɔktɔ go no if yu gɛt Ehlers-Danlos syndrome bay we i go chɛk yu bɔdi ɛn tek yu mɛdikal histri. Dɛn go luk yu skin ɛn yu jɔyn dɛm, ɛn aks yu bɔt yu sayn dɛm. Tɛl yu dɔktɔ bɔt ustɛm yu fɔs bigin fɔ gɛt di sik ɛn if yu sik kin wɔs we yu de du sɔm tin dɛn.

Bikɔs bɔku pipul dɛn we gɛt EDS nɔ kin ebul fɔ fɛn wan jenɛtik mutation we dɛn dɔn no, dɔktɔ dɛn kin du di diagnosis bay di sayn dɛn ɛn di mɛdikal histri.

Aw dɛn kin trit di sik we dɛn kɔl Ehlers-Danlos syndrome?

Yu dɔktɔ go tɛl yu fɔ gi yu tritmɛnt fɔ Ehlers-Danlos syndrome fɔ ɛp fɔ kɔntrol yu sik ɛn fɔ mek yu nɔ gɛt prɔblɛm dɛn we denja. Di tritmɛnt we rayt fɔ yu go dipen pan di kayn EDS we yu gɛt ɛn aw i de afɛkt yu kɔnɛktiv tisu dɛm.

Sɔm pan di tritmɛnt dɛm wae dɛn kin yuse na:

• Fɔ protɛkt yu skin: Yuz tin dɛn we de protɛkt yu frɔm di san we yu de go na do na di san, ɛn yuz sop dɛn we nɔ gɛt wan bɔt we nɔ de ambɔg yu skin. Bikɔs di skin rili dilik, dɛn nid fɔ tek kia ɔf am.
• Fizik tɛrapi: Ɛksesaiz fɔ mek di mɔsul dɛn we de rawnd di jɔyn dɛn strɔng. dis de gi εkstra sכpכt to di jכint dεm εn i kin ridyus di jכint stiffness.
• We yu wɛr bres: Dɔktɔ dɛn kin se yu fɔ wɛr spɛshal bres fɔ gi ɛkstra sɔpɔt to di jɔyn dɛn ɛn mek dɛn nɔ de chenj.

Bikɔs pipul dɛm wae gɛt Ehlers-Danlos kin gɛt bɔrku risk fɔ gɛt ɔstiɔ-arayt ɛn ɔda prɔblɛm wit dɛn jɔyn, yu dɔktɔ kin tɛl yu fɔ avɔyd sɔm tin dɛm. Fɔ ɛgzampul:

• Hevi lifting (strenuous lifting).
• Ha-impakt eksasaiz – e.g. rɔn, jomp.
• Kontakt spɔt – ɛgz. rɔgbi, futbɔl.

Yu tink se dɛn kin ebul fɔ protɛkt di sik we dɛn kɔl Ehlers-Danlos syndrome?

Bɔt i sɔri fɔ no se nɔ, dɛn nɔ go ebul fɔ protɛkt di sik we dɛn kɔl Ehlers-Danlos syndrome . Bikɔs wi nɔ kin ebul fɔ kɔntrol di chenj dɛn we de apin na di jɛnɛtiks we kin mek i apin, no we nɔ de fɔ mek wi nɔ gɛt EDS. If yu de wɔri se yu kin pas EDS (ɔ ɔda jenɛtik kɔndishɔn) to yu pikin dɛn, tɔk to yu dɔktɔ bɔt aw fɔ advays yu jɛnɛtiks .

If a gɛt EDS, wetin a fɔ ɛkspɛkt?

If yu gɛt Ehlers-Danlos syndrome, yu go gɛt fɔ kɔntrol yu sik dɛn fɔ di res ɔf yu layf. No mɛrɛsin nɔ de yet fɔ mɛn am . Bɔt, wae yu dɔn lan aw fɔ kɔntrol yu sik, yu fɔ ebul fɔ go bak to yu nɔrmal tin dɛm. Yu kin nid fɔ avɔyd fɔ du bɔku bɔku tin dɛn fɔ du (lɛk kɔntakt spɔt).

Ehlers-Danlos syndrome nɔr kin afɛkt ɔlman di sem we. Wetin yu go gɛt go dipen pan di kayn EDS we yu gɛt ɛn aw yu sik dɛn bad. Aks yu dɔktɔ wetin fɔ ɛkspɛkt bay aw yu sik.

Wetin na de layf fɔ pɔrsin wae gɛt Ehlers-Danlos syndrome?

Bɔrku kayn EDS nɔr kin afɛkt yu layf, dat min se i nɔr kin shɔt yu layf.

Bɔt if yu gɛt wan kayn EDS we de afɛkt di blɔd vesel dɛn (lɛk vaskul Ehlers-Danlos syndrome), yu kin gɛt strok ɔ ɔda prɔblɛm dɛn we kin kil yu blɔd vesel.

Ivin if yu gɛt vascular Ehlers-Danlos syndrome, yu dɔktɔ kin ɛp yu fɔ fɛn tritmɛnt ɛn chenj dɛn layf we go ɛp yu fɔ liv sef, wɛlbɔdi layf. Tɔk to yu dɔktɔ bɔt us sayn dɛm fɔ denja kɔmplikeshɔn wae yu fɔ wach fɔ.

Aw a kin kia fɔ misɛf?

Kip yu yay pan yu sayn dɛm ɛn go to dɔktɔ if yu notis ɛni chenj. Yu dɔktɔ go tɛl yu aw ɔltɛm yu fɔ kam na di klinik fɔ wach yu bɔdi fɔ si if yu gɛt chenj. Dɛn go chenj yu tritmɛnt if nid de.

Nɔ du spɔt dɛn we gɛt bɔku impak. We yu de du bɔku bɔku tin dɛn lɛk fɔ du spɔt we gɛt fɔ du wit yu bɔdi, dat kin mek yu gɛt injury na yu jɔyn dɛn (espɛshali di joyn dɛn we yu de jomp).

Ustɛm a fɔ go to mi dɔktɔ?

Si dɔktɔ if yu skin ɔ yu jɔyn dɛn fil wik, yu nɔ gɛt bɛtɛ tin fɔ du, ɔ yu gɛt ɛni chenj na yu bɔdi. Si dɔktɔ if yu brus bɔku tɛm pas aw yu bin de brus ɔ if yu fil lɛk se yu de blɔd.

Ustɛm a fɔ go na di Imejɛnsi Dipatmɛnt (ETU) ?

If yu ɔ pɔsin we de wit yu gɛt sayn dɛn fɔ strok , go na di imejensi rum wantɛm wantɛm ɔ kɔl 1990.

No di wɔnin sayn dɛm fɔ strok ɛn mɛmba fɔ BI FAST :

• B - Balans: Wach fɔ lɛ yu nɔ balans wantɛm wantɛm.
• E - Ay: Chɛk fɔ si if yu gɛt wan ɔ ɔl tu yay dɛn we yu nɔ de si wantɛm wantɛm, ɔ yu de si tu tɛm.
• F - Fes: Aks di pɔsin fɔ smayl. Luk fɔ wan ɔ ɔl tu di say dɛn na di fes fɔ mek i drɔp. Dis na sayn fɔ se di mɔsul dɛn wik ɔ nɔ de wok fayn.
• A - Arms: Aks dɛm fɔ es dɛn tu an. If wik de na wan say (if i nɔ bin de bifo), wan an go es ɔp we di ɔda wan go drɔp.
• S - Tɔk: We pɔsin gɛt strok , bɔku tɛm i nɔ kin ebul fɔ tɔk. Dɛn kin tɔk smɔl smɔl, dɛn kin tɔk bad bɔt dɛn wɔd dɛn, ɔ i nɔ kin izi fɔ dɛn fɔ pik di rayt wɔd dɛn.
• T - Taym: Taim na di essence, so no delay fo get helep! If i pɔsibul, luk di klok ɛn mɛmba di tɛm we yu sik bigin. If yu tɛl dɔktɔ ustɛm yu sik bigin, dat kin ɛp dɛn fɔ disayd us tritmɛnt go fayn fɔ yu.

Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?

We yu go to dɔktɔ, yu kin aks kwɛstyɔn dɛn lɛk dɛn wan ya:

• A gɛt Ehlers-Danlos syndrome ɔ ɔda tin?
• Us kayn EDS a gɛt?
• Us kayn tritmɛnt a nid?
• Us sayn ɔ chenj dɛn a fɔ luk fɔ?
• Aw ɔltɛm a go gɛt fɔ kam fɔ fala di visit?
• If a want fɔ bɔn pikin, a fɔ tink bɔt aw fɔ advays mi jɛnɛtiks?

Ehlers-Danlos syndrome (EDS) na wan jεnεtik kכndyushכn we de afekt yu abiliti fכ prodyuz kolagen, wan protin we de sכpכt yu kכnektiv tisu. Dis kin mek yu skin, yu joyn, ɛn ɔda tisu dɛn wik ɛn ebul fɔ chenj pas aw i kin bi. Yu dɔktɔ kin ɛp yu fɔ fɛn tritmɛnt fɔ kɔntrol yu sik dɛn ɛn fɔ mek yu nɔ gɛt prɔblɛm dɛn.

Nɔ fred fɔ aks kwɛstyɔn ɛn tɔk to yu dɔktɔ. Di sayn dɛm fɔ EDS kin rili shɔt, mɔ na di fɔs stej dɛm. Trust yusɛf ɛn lisin to yu bɔdi. If yu fil se yu sik de chenj, ɔr if yu fil se yu tritmɛnt nɔr de woke, tɔk to yu dɔktɔ.

Sɔma ɛn Mɛsej we dɛn kin kɛr go na os

Okay, so naw yu dɔn ɔndastand mɔ bɔt wetin wi bin de tɔk bɔt tide, Ehlers-Danlos Syndrome (EDS). Mɛmba se dis na jɛnɛtik kɔndishɔn we de mek wi kɔnɛktiv tisu wik, mɔ wan prɔtin we dɛn kɔl kolagen.

• di men tin dεm: di joyn dεm we kin fכm pasmak, we kin izi fכ sכt, dilikεt, izi fכ injuri, strεch skin, we de brus bכku tεm, εn di joyn/mכsul dεm we de pen na dεn wan dεm we kכmכn pas כl.
• Di tin we mek i apin: Na wan chenj we de apin na di jɛnɛtiks.
• Tritmɛnt: Fɔ mɛn di sik na di men tin. Fɔ trit yu bɔdi, fɔ protɛkt yu skin, ɛn fɔ wɛr sɔpɔt if nid de, impɔtant. I fayn bak fɔ avɔyd fɔ du tin dɛn we go mek pɔsin gɛt bɔku prɔblɛm dɛn.
• Di tin wae impɔtant pas ɔl: If yu gɛt dɛn kayn sik ya, ɔr if pɔrsin na yu famili gɛt dis sik, i fayn fɔ go to dɔktɔ fɔ advays. Nɔ jomp to kɔnklushɔn fɔ yusɛf.

Fɔ liv wit dis sik kin tranga, bɔt if yu de trit yu fayn fayn wan ɛn gi yu mɛrɛsin to yu, bɔrku pipul dɛn kin liv nɔrmal, aktif layf. Yu nɔ de yu wan, gɛt ɛp.

` Ehlers-Danlos Syndrome, kכnektiv tisu, kolagen, joyn laxity, skin tayt, jεnεtik sik dεm, EDS, haypamobiliti