Nu emaw, pa emaw i nih angin i fa taksaa inthlak danglamna tenau apiang i ngaihven vek a ni lawm ni? A châng chuan, thil tenau ber kan hmuh chu thil lian zâwk chhinchhiahna a ni thei bawk. Vawiin hian chutiang natna hlauhawm tak pakhat chu kan sawi dawn a, mahse mi zawng zawng tan hriat a pawimawh hle. He natna hi Fibrodysplasia Ossificans Progressiva, a tawi zawngin FOP a ni.
FOP hi eng nge ni tak tak?
A awlsam zawngin sawi ila, he natna hi kan taksaa taksa peng nêm tak tak, taksa ruh, ruh, leh ruhro te chu zawi zawiin ruhah a lo chang ta a ni. Ngaihtuah teh, kan taksa ruh hi a awm a, a inthlak danglam thei a, a che thei bawk. Kan ruhte hi structure leh framework nghet tak pe turin a awm a ni. Heng system pahnih hnathawh dan hi a danglam vek a ni.
Mahse he FOP tia koh dinhmun tlemteah hian he system mumal tak hi a chhe ta a ni. Taksa hian soft tissue chu a mah chauhin ruh ah a chantir tan thin. Kan chhungah, kan ruh pangngai pawnah chuan ruh thar a lo thang lian ang mai a ni.
Chutianga ruh thar a lo pian chuan taksa peng hrang hrangte chu zawi zawiin a harsa a, a chang chuan a theih loh vek bawk. Hei hian nitin hna, inbiakna leh chaw ei ang chi pawh a ti harsa hle.
Hetiang dinhmun hi naupan lai atanga tan a ni tlangpui. Kawr leh kekawrte a\angin a in\an hmasa a, zawi zawiin taksa hnuai lam thlengin a darh \hin. Mi an tar chhoh zel chuan ruh soft tissue thlaktu zat a pung zel a ni. Mahse, hei hi a kal zel dan rate chu mi hrang hrangah a inang lo thei.
Engvangin nge hetiang hi a lo awm? Eng nge a chhan?
A chhan ber chu kan taksa ruh leh thau tihpun dan tur hrilhtu gene-a chhiatna tenau vang a ni. Dik tak chuan hrisel taka thanlen lai pawhin soft tissue thenkhat chu ruh ah a chang thin. Mahse he genetic defect avang hian taksain a mamawh aia tam ruh a siam a, chu chu a mamawh loh laiin.
A tam zawkah chuan hei hi nu leh pa atanga fate rochun thil a ni lo. Mahse, a thleng tlem hle. A tam zawkah chuan dam chhunga thil thleng (new mutations) random change (random change) a ni.
He natna lan chhuah dan berte chu engte nge ni?
He natna hriat theihna tura puitu symptom lian pahnih a awm. Hengte hi fimkhur a pawimawh hle.
A chhinchhiahna hmasa ber leh langsar ber chu pian tirh lamah hmuh theih a ni. Ke pahniha ke ruh lian tak takte chu a tlangpui aia tawi zawkin chhung lam hawiin, chu chu ke ruh dang lam hawiin a inher a ni. Naupang 50% velah chuan kut ke ruh lianah pawh hetiang danglamna hi hmuh tur a awm. Hei hi he natna rinhlelhna atana initial clue pawimawh tak a ni.
Symptom lian ber pahnihna chu a hmaa kan sawi tawh ang khan soft tissue ruh-a inthlak hi a ni. Hei hi a tlangpuiin hnungzang, kawr leh kekawrteah natna nei, tumor ang chi a lo lang atanga tan a ni. Heng lumps te hi "flare-ups" an ti bawk. Heng lumps te hi hun kal zelah ruh ah an chang thin. Heng flare-up te hi nun chhung zawngin a thleng nawn leh thei a ni.
| Sign chi hrang hrang | Hrilhfiahna |
|---|---|
| Pian chhuahna chhinchhiahna | Ke pahniha ke ruh lian tak takte chu a tlangpui aia tawi zawkin ke ruh dang lam hawiin a inher lut a ni. |
| Flare-up a awm thin | Taksaah (a tam zawkah chuan kawr, kekawrte, hnungzang) ah lump na tak tak a lo lang thin. Heng lumps te hi kar 6-8 vel a awm thei a, chutah chuan ruh ah a chang thei bawk. |
Flare-ups awm chhan te
Hriat tur pawimawh: Hliam tenau, tlu, operation, emaw injection (ha lakna atana anesthetic injection pawh) hi heng natna hrik (flare-ups) thlentu lian ber a ni thei. Chuvang chuan he natna vei hian eng damdawi in pawh a lak hmain a fimkhur hle tur a ni. Viral infection pawhin he natna hi a tizual thei a ni.
Flare-up lai hian bumps chhehvelah hian natna, hliam, ruh natna, malaise, leh low-grade fever te ang chi symptoms a awm thei.
Hetiang dinhmun avang hian eng harsatna nge awm thei?
Taksa nêm (soft tissue) te chu ruh a lo chang chhoh zel chuan a kal theihna a tlem a, chu chuan harsatna chi hrang hrang a thlen thei a ni.
- Thâwk harsa: Chhung ruhte chu ruh-ah a chantir chuan lung chu a zau kim thei lo.
- Chaw ei harsa: Jaw joint movement tihkhawtlai a nih chuan hmui hawn leh ei a harsa thin. Hei hian ei leh in lama harsatna a thlen thei a ni.
- Taksa inthlauhna hloh: Kal lai emaw, thut lai emawa balance neih harsa.
- Thusawi harsa
- Scoliosis natna (Scoliosis) a ni
- Hri kai fo: Incheina tlakchham vangin hnar, kawr leh lung nena inzawm natna kai theihna a sang hle.
- Heart attack hlauhawmna: A then phei chuan hei hian heart function a nghawng thei bawk.
Engtin nge natna hi kan hriat theih ang?
A tlangpuiin, doctor chuan taksa enfiahnaah heng chhinchhiahna lian ber pahnih—ke ruh lian leh hnungzang leh kekawrtea hruihrual inang lo—a hmuh hian he natna hi a ringhlel ṭhin.
Hei hi FOP a nih leh nih loh finfiah nan hian thisen test bik (genetic test) hmangin natna thlentu genetic defect hriat theih a ni.
Pawimawh tak: FOP hi cancer emaw, thil dang hmuh tur awm lo emaw anga ngaih theih a ni fo. Chuvangin biopsy ang thil hi rinhlelhna avanga tih a nih chuan a pawi hle thei a ni. A chhan chu hliam hi natna tizual leh ruh thar siamna chhan lian tak a nih theih avangin. Chuvangin, i fain heng symptoms te hi a nei a nih chuan FOP i rinhlelh thu doctor hnenah hrilh a, he lam thiamna nei doctor pan a pawimawh hle.
Hei hi enkawl dan tur a awm em?
Vanduaithlak takin he natna hi damdawi a la awm lo a, enkawl dan pawh a tlem hle.
I doctor chuan damdawi thenkhat, corticosteroids ang chi te chu flare-ups-a natna leh hliam lo awm thin control nan a pe thei a ni.
Tin, nitin hnathawh awlsam zawk nan occupational therapist puihnain special shoes leh braces ang chi assistive devices te pawh i hmu thei bawk.
Take-Home Thuchah a ni
- FOP hi genetic disease a ni lo hle a, taksaa soft tissue te, muscle te pawh ruh ah a chang thin.
- He natna chhinchhiahna hmasa ber pakhat chu a ke ruh lian tak hi a tawi a, naupang a pian hian a chhung lam a hawi a ni.
- A hnua a lan chhuah dan ber dang chu taksa chunglama flare-ups na tak tak a ni.
- Pawimawh tak: Hliam tenau te, tlu te, injection te, a bik takin biopsy te hian natna hi nasa takin a tizual thei a ni.
- I fain heng symptoms te hi a nei nia i rinhlelh chuan doctor pan nghal la, FOP chungchanga i rinhlelhna te sawi rawh.
- He natna hi damdawi awm lo mah se, a natna lan chhuah dan tur enkawltu leh nun awlsam zawka siam thei tur enkawlna a awm.
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