I ṭhiante aiin i ruhte chu a ben leh che deuh tih i hmu ngai em? A nih loh leh hmun tlemte i tawk pawhin i hliam a, i hliam bawk em? "Aw... chutiang chiah chu ka taksa chu a ni, ka naupan lai atang tawh khan hetiang hian ka awm tawh a ni," tiin i ngaihtuah mai thei. Mahse hengte hi a chang chuan kan sawi tam loh, mahse kan hriat a ngai tak zet a ni. Vawiin hian chutiang dinhmun pakhat, Ehlers-Danlos Syndrome, a tawi zawngin EDS emaw kan sawi dawn a ni.
A awlsam zawngin sawi ila, Ehlers-Danlos Syndrome (EDS) hi eng nge ni?
Kan taksa hi in mawi taka sak angin han ngaihtuah teh. He building chhunga thil awm zawng zawng, brick, bang leh inchung te pawh hi cement hmanga vawn tlat leh nghet taka chelh a ni. Chutiang bawkin, kan taksa peng hrang hrang, ruh, ruh leh vun te chu tissue network bik hmangin a inzawm a, a thlawp a, a chelh nghet tlat bawk. Hengte hi connective tissue kan ti a .
He connective tissue a hero ber chu protein pakhat collagen an tih hi a ni . Cement ang mai a ni. He collagen hi kan vun, kan ruh leh kan thisen kalna kawngte chakna leh nghetna petu a ni.
Tunah chuan, Ehlers-Danlos Syndrome (EDS) vei taksaa thil thleng chu hetiang hi a ni: An taksain he protein collagen an tih hi a siam danah hian genetic change a awm a. Chuvangin collagen siam chhuah chu a chak tawk lo, cement hlui ang maiin. Chuti a nih chuan eng nge thleng? Building a chak lo ang mai a ni a, taksa chhunga connective tissue a chak lo ang mai a ni. Chuvangin taksa hmun tam tak a nghawng thei a ni.
- Thisen leh thisen kalna kawngte
- Ruh (ruh) .
- Cartilage (ruh inkar tissue hrual) .
- Thau
- Junction (joint) te chu .
- Muscle te hi a ni
- Vun
EDS chi hrang hrang lian ber ber a awm em?
Ni e, EDS hi mi zawng zawng tan a inang lo. He natna hi taksa a nghawng dan leh a natna lan chhuah dan a zirin chi hrang hrang 13-ah then a ni. Mahse vawiin hian a bik takin i hriat chian tur chi hrang hrang kan sawi dawn a ni.
| EDS type hming a ni | Thuhmahruai tawi te |
|---|---|
| Hypermobile EDS hmanga kal a ni | Hei hi a tam ber chi a ni. An joint te hi rintlak takin a flexible a, a loose bawk. ‘lock in’ ang maiin an inhria. Joint te hian ‘click’ sound an siam fo a, awlsam takin an snap thei bawk. |
| Classical EDS tih a ni | Hei hi a chunga kan sawi ang chi nen hian a inang a, mahse ruhkawr aiin vun a nghawng nasa zawk. A vun hi a hring hle a, rubber ang mai a ni a, awlsam takin a chhe thei a, a hliam thei bawk. |
| Classical ang chi EDS ang chi | A hming ang bawkin Classical EDS nen hian a inang hle a, mahse a natna lan chhuah danah erawh a danglamna tlem a awm. Hengte hi doctor chauhvin a hmuchhuak thei a ni. |
| Cardiac-valvular EDS hmanga tih hi a ni | Hei hian cardiovascular system leh heart valve te a nghawng thei a, vun leh ruhkawr ah symptom a siam thei bawk. |
| Vascular EDS hmanga siam a ni | Hei hi chi hrang hrang hmuh tur awm lo leh hlauhawm tak a ni. Ruhkawr aiin thisen kalna kawng leh chhungril lam a nghawng nasa zawk. An bangte hi a chak lo va, awlsam takin a puak thei a, a chhe thei bawk. Hei hi ngaihtuah vat ngai dinhmun a ni. |
EDS natna lan chhuah dan tlangpui chu engte nge ni?
Tunah chuan, "Hei hi ka nei ve em tih pawh ka hre lo," i ti mai thei. Hetiang natna lan chhuah dan tlangpui hi han thlir ila. Mahse thil pakhat hre reng ang che, heng chhinchhiahna pakhat emaw pahnih emaw i neih vang mai mai hian EDS i nei tihna a ni lo . Heng symptoms te hi natna dang ah pawh hmuh theih a ni. Chuvangin, a tha ber chu rinhlelhna i neih chuan doctor pan la, definitive diagnosis siam hi a ni .
| Symptom a ni | A awlsam zawngin... |
|---|---|
| Hypermobile joint a awm bawk | Joints te hi a tlangpui aia nasa zawkin an bend thin. Ṭhenkhat chuan ‘double jointed’ an ti. A kekawrte, khup leh kut zungtang ang chi ruh (joint) te hi a che reng a ni. |
| Vun hrual, hrual hrual | A vun chu a hmin hle a, velvet ang mai a ni. Tin, pizza dough ball ang maiin i duh angin i hrual thei a, i thlah lai khan a awmna hmunah a kal leh nghal bawk. |
| Vun chhe thei lo leh hliam tuar | Hliam te tak te pawh hi a dam theih nan hun rei tak a ngai thin. A hliam awlsam a, a chang chuan a hliam chu a hring deuh a, a rawng pawh a danglamin a lang bawk. |
| Bruising awlsam tak a ni | A chang chuan khawiah mah vuak loh pawhin taksaah hian blue bruise a lo lang thin. Khawi emaw laiah tlemte chauh i vuak pawhin a blue ang. |
| Joint leh muscle natna | Natna ang chi, ruh leh taksa peng hrang hrangah natna a awm reng a. He natna hi a lo thleng a, a kal zel bawk. |
| Chauhna rei tak a awm | Mut that hnuah pawh nilengin chau leh nunna nei lo anga inhriatna. |
| Digestive system lama harsatna awm thei | Pum natna, pum na, chaw ei kham, etc. i nei thei a, mi thenkhat chuan Irritable Bowel Syndrome (IBS) ang chi natna an nei thei bawk. |
| Hernias vei theihna a ni | Hernia vei theihna a sang zawk a, a chhan chu taksa peng hrang hranga connective tissue a chak loh vang a ni. |
Eng thilin nge EDS hi a thlen? Hri kai theih a ni em?
Ni lo, EDS hi mi pakhat atanga mi dang hnena kal theih thil a ni lo . Genetic condition a ni vek a . Chu chu kan genes-a genetic change avanga lo awm a ni tihna a ni. He chhiatna hi a hmaa kan sawi tawh ang khan collagen protein siam tura min hrilhtu gene-ah a awm a ni.
Mithiamte chuan EDS thlentu genetic variation hrang hrang 20 chuang an hmuchhuak tawh a ni. Eng genetic variation nge i neih tih hian EDS chi leh symptoms i neih dan tur a hril.
EDS chi thenkhat chu nu leh pa atanga fate rochun theih a ni. Chumi awmzia chu nu leh pa tu pawhin he natna hi an neih chuan naupangte pawhin an neih theihna chance a awm tihna a ni. Mahse, chi thenkhat chu somatically-ah pawh a thleng thei a, chhungkaw history engmah a awm lo.
I chhungkuaa mi tu emaw hian he natna hi a nei a nih chuan, emaw, chutiang bawka natna lan chhuahna i neih chuan doctor nena inbiakna neih a pawimawh hle a, a tul chuan genetic counseling lak a pawimawh hle
EDS avanga harsatna awm thei te chu engte nge ni?
Hetiang dinhmuna harsatna awm tam ber chu dislocation a ni . Hei hi thil hrehawm tak a ni thei. Hetah hian kan hriat reng tur pawimawh tak a awm a.
Joint i dislocate chuan nangmah ngeiin reattach tum ngai suh, midang tih tir tum ngai suh! Hei hian ruh, a chhehvel tissue leh nerve te a tichhe lehzual dawn chauh a ni. A tha ber chu damdawi in hnai ber Emergency Department (ETU) ah a rang thei ang bera kal hi a ni.
Vascular EDS ang chi na tak tak thenkhatah chuan nunna atana hlauhawm thei khawpa harsatna a awm thei a ni. Entirnan, thisen kalna kawng a puak thei a, taksa chhungah thisen a chhuak thei a, stroke ang chi natna khirh tak tak a thlen thei bawk .
Harsatna dangte chu:
- Scoliosis natna (Scoliosis) a ni
- Heart valve lama harsatna nei
- Ha leh ha leh hmuam lama harsatna a awm
- Bowed limbs te chu
EDS enkawl dan leh enkawl dan
A hmasa berah chuan EDS hi damdawi a la awm lo. Mahse, lungngai suh. I natna lan chhuah dan chu i thunun thei a, harsatna i veng thei a, nun pangngai leh tha takin i nung thei bawk. Enkawlna tum ber chu i natna lan chhuah dan enkawl hi a ni.
- Physical therapy: Hei hi a pawimawh hle. Exercise hmanga ruh chhehvel thau tichaktu hian ruh khauh leh natna a tihziaawm thei a ni.
- Brace bik vuah:I doctor chuan extra support pe tur leh ruh chak lote venhim nan special braces a rawt thei ang.
- Vun enkawlna bik: Vun hi a sensitive em em a, ni chhuahna hmuna kan chhuah dawnin sunscreen hmanga venhim a pawimawh a, sahbawn nalh tak, ti na lo tak tak hmanga ven a pawimawh bawk.
Tin, ruh tichhe thei thil thenkhat atanga inthiarfihlim a tha ber bawk.
- Infiamna lam biak theih a ni
- High-impact exercise (tlan, zuang, leh high-impact exercise dangte) .
- Weight lifting a ni
Hei hian exercise i ti thei lo tihna a ni lo. I taksa tana tha leh i ruh tichhe lo tur exercise, tui chawi emaw, cycle khalh emaw te chu i doctor nen in sawi dun thei ang.
EDS nena nun hi a châng chuan a harsa thei hle. Natna leh hahna reng reng hian a ti lungngai thei hle. Chu chu thil pangngai a ni. Mahse, i tlin lohnate chu i hrethiam thei a, a ṭûl angin inthlâk danglamna i siam thei a, i duhzâwng thilte chu i ti chhunzawm thei bawk. I taksa chu ngaithla rawh. I natna lan chhuah danah emaw, i rilru put hmangah emaw danglamna i hmu a nih chuan i doctor nen inbiakna neih hi hlau suh.
Take-Home Thuchah a ni
- Ehlers-Danlos Syndrome (EDS) hi genetic condition a ni a, collagen protein a tlakchham vang a ni.
- A lan chhuah dan ber chu ruhte ben lutuk leh zuang chhuak fo, vun elasticity, leh hliam awlsam tak a ni.
- Dam vek theih ni lo mah se, taksa lam enkawlna te, nunphung tihdanglam te, leh damdawi lam thurawn dik tak te hmangin a natna lan chhuah dan chu uluk taka enkawl theih a ni.
- Joint i pop chuan nangmah ngeiin siamthat tum ngai suh la, hospital emergency room (ETU)-ah kal nghal rawh.
- Heng symptoms te hi i neih emaw, chhungkaw history nei emaw i nih chuan doctor pan a, dik taka hriatchhuah leh thurawn pek a pawimawh hle.
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