I ruhte chu a ben lutuk em? I vun a inzawm em? Ehlers-Danlos Syndrome (EDS) chungchang hi i zir dawn a ni.

I ṭhiante aiin i ruhte chu a ben tam zawk tih i hmu ngai em, a nih loh leh i ṭhiante aiin i inzawm tam zawk tih i hmu ngai em? A nih loh leh hmun tlemte i tihbuai hian hliam lian tak i nei em? Heng thilte hi thil pangngaiah i ngai mai thei a, mahse kan hriat tam loh natna pakhat Ehlers-Danlos Syndrome (EDS) an tih vang pawh a ni thei. Lungngai suh, a awlsam zawngin sawi ila.

A awlsam zawngin sawi ila, Ehlers-Danlos Syndrome (EDS) hi eng nge ni?

Ehlers-Danlos Syndrome (EDS) hi genetic condition a ni a, kan taksa a nghawng nasa hle. Kan taksa inzawmkhawmtu connective tissue te chu a tichak lo hle. Kan ruh, ruh, leh thisen ang chi thilte inzawmkhawmtu glue angin han ngaihtuah teh. EDS vei mi pakhatah chuan he glue hi a chak lo hle.

Hei hian i ruhte a tizau thei a, i vun a ti hring a, a hliam awlsam a, a chang chuan i thisen kalna kawng leh chhungril lam pawh a chak lo thei bawk. Tunah hian hei hi damdawi awm lo mah se, i natna lan chhuah dan chu uluk takin i enkawl thei a, nun pangngaiin i hmang thei bawk.

EDS chi hrang hrangte chu engte nge ni?

He natna sawi hmasak bertu doctor pahnih Ehlers leh Danlos te hming chawia sak a ni. Tunah hian natna chi hrang hrang 13 a awm mek a ni. A chi tin hi tlem a inang lo hle nachungin, an vaiin chhan inang an nei vek a, chu chu ruh leh vun chak lohna a ni. A chi hrang hrang hi han thlir ila.

EDS natna lan chhuah dan tlangpui chu engte nge ni?

EDS i neih chi hrang hrang a zirin symptoms a inang lo thei a, mahse hengte hi mi tam zawkin an tawn tlangpui thenkhat chu an ni:

• Overly flexible joints: I ke ruh lian tak chu i ben thei a, i kut hnuai lam thlengin i khawih thei a nih chuan, emaw, i khup hnunglam i ben thei a nih chuan, chu chu hei hi a ni tih han ngaihtuah teh.
• Skin stretchy: I vun chu i taksa atanga hlaah i hrual a, chutah chuan i thlah a, rubber band ang maiin a hmunah a snap leh thei ang em? Vun pawh hi a nem hlein a lang thei a, velvet ang maiin.
• Bruising awlsam: Vun hi a chhe hle . Bump te tak te pawh hian hliam lian tak, hliam leh hliam te a siam thei a, chu chu a dam theih nan hun rei tak a ngai a ni.

Thil hmuh theih dangte

Heng thil pawimawh tak takte bakah hian thil dang pawh i hmu thei bawk:

• Ha lama harsatna (ha hrual, ha thisen chhuak) .
• Joint natna
• Mut that hnu pawha chau tih hriat
• Focus chungchangah harsatna a awm
• Lu na
• Ke flat tak a ni
• Muscle chak lohna, a bik takin khaw lum laiin
• Zun control harsat
• Luak chhuak thei
• Digestive system lama harsatna awm thei, bloating leh gastritis te

Naupang tê têa hmuh theih symptoms

Naupang thenkhatin EDS an neih chuan an thanlennaah thil engemaw tak i hmu thei bawk.

• Motor skill-a thut, ding, leh kal tihkhawtlai.
• Kum nena inmil san zawng leh rih zawng nei lo.
• Rare breed thenkhatah chuan hmel lan dan bik (mit lian, hmui te, hnar te tak te) hmuh tur a awm.

Engvangin nge EDS hi a lo awm?

A awlsam zawngin sawi ila, EDS hi kan taksaa protein pakhat collagen an tih chu a siam that loh vang a ni. Collagen hi ka sawi tawh ang khan kan ruh, vun leh taksa peng hrang hrangte inzawmkhawmtu "glue" a ni. He glue chakna a tlahniam chuan a inzawm zawng zawng chu a chak lo va, a thawk tha lo.

EDS hi genetic disorder a ni a . Chumi awmzia chu nu leh pa atanga fate hnena kai theih a ni tihna a ni. I nu emaw i pa emaw hian he natna hi a neih chuan nang pawhin i vei theihna chance a sang zawk. Mahse, a châng chuan mi thar chuan chhûngkuaa tu mahin an neih lohvin a nei thei a ni.

Engtin nge doctor hian hei hi a hriat chian?

Heng symptoms chungchang hi doctor hnena i kal chuan taksa enfiahna a nei hmasa ang.

• Joint examination: Hei hian i khup, i elbow leh i kut zungtang i ben theih dan tur a enfiah ang. I kut zungtang chu i kut hnuai lam thlengin i khawih thei em? I kut zungtang te tak te chu degree 90 aia tam i ben thei em?
• Vun enfiah: Vun a tight, a hliam, leh a hliam te a enfiah thin.
• Chhungkaw chanchin: Nangmah emaw, i chhungkuaa tu emaw pawhin heng symptoms hi an lo nei tawh em tih zawhna i dawng ang.

A tam zawkah chuan he test atang chauh hian doctor hian ngaihtuahna a nei thei a, mahse a chang chuan a natna hriat chian nan test tam zawk neih a ngai thei bawk.

Test neih a nih chuan confirm theih a ni

• Genetic testing: Thisen sample lak theih a ni a, EDS thlentu gene mutations engemaw zat a awm em tih hriat theih a ni.
• Echocardiogram: Thinlung emaw thisen kalna kawng emawa harsatna awm nia rinhlelhna a awm chuan he painless scan hi thinlung hnathawh dan enfiah nan tih theih a ni.
• CT scan emaw MRI scan: Hetiang scan chi hrang hrang hi ruhro, nerve, chhungril lam taksa peng hrang hrangah nghawng a nei em tih hriat nan a ngai mai thei.
• Skin biopsy: Vun te tak te chu la in microscope hmangin an enfiah a, collagen-a thil dik lo awm leh awm loh an enfiah thin.

Engtin nge enkawl leh enkawl a nih?

Eng chi EDS nge i neih tih i hriat chian hnuah chuan a kaihhnawih symptoms te chu i enkawl thei tawh ang. Chutiang ti tur chuan specialist hrang hrangte tanpuina i mamawh mai thei. Entir nan:

• Orthopedist doctor a ni
• Vun lam doctor
• Rheumatologist a ni
• Cardiologist a ni

Enkawlna kawng hrang hrangte chu:

• Physical therapy: Exercise leh physical therapy hi taksa ruh chakna leh ruh nghet lo tihziaawmna atan a pawimawh hle . Exercise awlsam tak tak, kea kal leh tui chawi te hi a tha hle.
• Occupational therapy: Nitin hna awlsam tak leh taksa tichhe lova tih theihna tur technique leh hmanraw mamawh te a zirtir che a ni.
• Assistive devices: Joint siamna tur braces vuah, leh a tul chuan wheelchair ang chi hmanrua hman.
• Painkillers: I ruh natna atan doctor-in a pek painkiller i ei thei.
• Surgery: Enkawlna dangin a dinhmun a thunun theih loh chuan ruh siam that nan surgery an ti thin. Mahse, EDS vei te hian hliam damna an tihkhawtlai fo avangin hei hi a tawp ber anga ngaih a ni.

EDS nena kan khawsak huna ngaihtuah tur thil

EDS hi dam chhung zawnga awm tur a nih avangin nunpui zir a pawimawh hle.

• I vun humhim rawh: Sahbawn nem tak hmang rawh. Ni chhuahna hmuna chhuah dawnin sunscreen hnawih fo thin ang che. I khup leh i elbow-ah protective pads vuah tur a ni.
• High-impact sport pumpelh: Tlan, zuang, leh contact sport te chu pumpelh rawh. Thil rit phurh loh tur.
• I ha enkawl rawh: Ha hring hring nei hmang la.
• Rilru hriselna: Hetiang natna nena nun hian rilru hahdamna a thlen thei a, chuvangin counselor hnen atangin tanpuina zawng la, emaw, ngaihdan inang nei mite nen support group-ah tel ve rawh.

Chhungkaw din i ngaihtuah a nih chuan, he natna hi fa rochun thei tur i neih theihna tur i hriat theih nan genetic counselor puihna i la thei ang.