I ruhte chu a ben lutuk em? I vun a inzawm em? Ehlers-Danlos Syndrome (EDS) chungchang hi han sawi ila!

I ruh chu midang aiin a flexible zawk angin i inhriat ngai em? I kut zungtangte chu kawng danglam takin i ben leh thei a, a nih loh leh i vun chu a tlangpui aia inzawm lo zawkin i hria mai thei. Chûngte chu thil pangngai ang maia lang mah se, a châng chuan Ehlers-Danlos Syndrome (EDS) tih hming pu genetic condition vang pawh a ni thei. Lungngai suh, hei hi mi tam takin an la hriat ngai loh thil a nih avangin vawiinah hian i hriatthiam theih tur awlsam takin kan sawi dawn a ni.

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

Kan taksa hi brick hmanga siam building angin han ngaihtuah teh. Heng brick (chu chu kan taksa peng, ruh leh vun) te hi mortar hmanga vawn khawm a ni. Chutiang bawkin kan taksa peng hrang hrangte inzawmkhawmtu leh nghet taka awmtirtu ‘mortar’ chu connective tissue an ti a. Chûngte chu kan ruh, kan ruh, vun leh thisen kalna kawng tinah hmun tinah a awm a.

Ehlers-Danlos Syndrome (EDS) hi genetic disorder a ni a, chu chuan connective tissue a tichak lo hle. A chhan ber chu connective tissue chakna atana pawimawh protein collagen tlakchham vang a ni. Mortar mix cement tlachham ang mai a ni. Hei hian ruh a tizau a, vun a tizau lutuk a, a hliam awlsam a, a chang chuan thisen kalna kawng leh chhungril lam pawh a tichak lo bawk.

Hei hi chhungkaw hrang hranga kal thin , genetic disease a ni. Mahse, a damdawi bik erawh a la awm lo. Mahse a tha ber chu a natna lan chhuah dan control leh enkawl thiam a, nun pangngaia nun theih hi a ni.

EDS chi hrang hrangte chu engte nge ni?

EDS hi a sawi hmasak bertu doctor pahnih hming chawia phuah a ni. Tunah hian a 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 insiam chak lohna a ni. A chi hrang hrang hman tlanglawn berte 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 a ni.

• Joint flexible lutuk: Entirnan, i kutpui chu i curl thei a, i kut hnung lamah i hnawih thei a, i khup hnunglam i ben thei bawk. Mi thenkhat chuan hei hi ‘double-jointed’ an ti.
• Vun inzawm: I vun hi i taksa atanga lak chhuah theih a ni a, i thlah chuan a awmna hmunah a kir leh thin. A hmin thei hle bawk, ​​velvet ang maiin.
• Vun chhe thei: Vun hi a sen a, vuak tlemte hnuah pawh a hliam. I hliam a nih chuan a dam theih nan hun a duh rei zawk. Scars hi awlsam takin a lo awm thin.

Hei hi a awm fo bawk:

• Ha lama harsatna (ha lakchhuah, ha thisen chhuak) .
• Joint natna
• Mut that hnuah pawh chau lutuk tih hriat
• Thil ngaihtuah harsa tak a ni
• 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, puak ang chi

Naupangin EDS an neih chuan kea kal leh ṭhut ang chi motor thiamna a nghawng thei a ni.A tlai thei a, i kum nena inmil san zawng i nei lo mai thei bawk.

Engtin nge natna hi kan hriat theih ang?

Hetiang symptom i report hian i doctor chuan uluk takin a enfiah hmasa ang che.

• I khup, i elbow leh i ke ruhte i ben theih dan tur chu an hmu ang.
• I vun chu eng chen nge a inzawm tih leh hliam emaw, hliam emaw a awm leh awm loh an enfiah ang.
• I chhungkuaah hian heng symptoms hi an nei em tih zawt rawh.

A tam zawkah chuan hEDS ang chi hi he taksa enfiahna hmang chauh hian hriat theih a ni. Mahse, a chang chuan a natna hmuhchhuah leh chi dik tak hriat chian nan test dang neih belh a ngai thin.

• Genetic testing: Thisen sample lak theih a ni a, EDS thlentu gene mutations a awm em tih hriat theih a ni.
• Echocardiogram: Lung leh thisen kalna kawnga harsatna awm leh awm loh enfiahna sound wave test a ni.
• CT scan emaw MRI scan: Heng scan te hian ruhro emaw, chhungril lam emaw dinhmun a hriat theih nan a pui thin.
• 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.

Enkawl dan leh enkawl dan

Eng chi EDS nge i neih tih i hriat chian hnuah i doctor nen i symptoms enkawl dan tur i sawi thei ang. Specialist hrang hrang i hmuh a ngai mai thei bawk.

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

Enkawl dan tlangpui thenkhat chu hetiang hi a ni:

• Physical therapy: Hei hi taksa ruh tichak tur leh ruh nghet lo tur venna atan a pawimawh hle. Exercise low-impact, kea kal leh tui chawi te hi a tha hle.
• Occupational therapy: Nitin hnathawh awlsam zawk nan technique leh device te i zir thei ang. I ruh (joint)-a stress tihziaawm dan tur thurawn i dawng ang.
• Assistive devices: Joint movement ven nan braces emaw, i kalna tur wheelchair emaw i mamawh mai thei.
• Painkillers: Ruh natna atan chuan painkiller pangngai emaw, a tul chuan doctor-in a pek damdawi chak zawk emaw i ei thei.
• Surgery: Surgery hi ruh natna awm fo leh enkawlna dang hmanga thunun theih loh siamthat nan hman a ni. 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 neia nun hian i taksa hi tlem tal i enkawl belh a ngai tihna a ni. Heng thilte hian chetsualna laka inven nan a pui thei che a ni.

• Infiamna hahthlak tak takte chu pumpelh rawh:Contact sports leh exercise, ruh (joint)-a pressure nasa tak siamtu, tlan ang chi te chu pumpelh rawh.
• Thil rit chawi suh: Thil rit chawi hian ruh (joint) a ti chhe thei a, hliam a tuar thei bawk.
• I vun humhim rawh: Sahbawn nem tak hmang rawh. Nitin sunscreen hnawih thin ang che. Khup leh kekawrte ang chi hmunah chuan protective pads vuah tur a ni.
• I ha enkawl rawh: Ha hring hring nei hmang la.
• Rilru hriselna: Hetiang dinhmun rei tak nena nun hian rilru a ti na thei hle. Counselor nena inbiakna emaw, ngaihdan inang nei mite nena support group-a tel emaw chu ṭanpuitu ropui tak a ni thei.

Chhungkaw din i ngaihtuah a nih chuan he natna hi i fate hnena kai theih dan tur hrethiam turin genetic counselor nen inbia thei ang.