Hemophilia leh Alhemo: Thisen chhuahna control nana tunlai damdawi a ni

Hemophilia tih natna hi i hre tawh em ? Hei hi thil awm lo mahse a nasat em em a ni. A awlsam zawngin kan taksaah thisen a inkhung tha lo tihna a ni. Chumi awmzia chu hliam tenau, tlu emaw, hliam emaw pawh ni se, a châng chuan thisen chhuahna nasa tak a thlen thei tihna a ni. A châng chuan a chhan hriat lohvin mahni in thisen a chhuak thei bawk.

Hemophilia hi eng nge ni tak tak?

Thisen kan chhuah hian kan taksaah hian thawktu pawl tlemte, chu chu tihtawp tumin thawktu an nei tih han ngaihtuah teh. Heng hnathawkte hi ‘factors’ kan ti thin. Hengte hi a takah chuan protein chi hrang hrang an ni. Heng thilte hi an inzawm khawm a, thisen zam a siam a, thisen chhuah chu a titawp a ni.

Hemophilia hi chi hnih a awm a, chungte chu:

• Hemophilia A: Heng mite hian thisen zam chhuahna atana mamawh protein factor VIII an nei tlem hle.
• Hemophilia B : Heng mite hian factor IX tih protein an tlachham a ni .

Hei hi i doctor chuan deficient factor chu thisenah a pe che a, a enkawl tlangpui. Thisen chhuak lo tura inenkawlna chu “prophylaxis” an ti a, thisen chhuah huna enkawlna chu “on-demand” an ti bawk.

Mahse, hetah hian harsatna tlemte a awm...

Damlo thenkhatah chuan taksa hian heng vaccine hmanga kan pek thinte hi a dodal tan thin. Hmelma nia inngaiin a bei ang maiin. Hei hi “inhibitors” siamna kan ti a ni. Chutiang a nih chuan kan pek factor therapy thiltihtheihna chu a tlahniam ta a ni. Chuvangin, heng ‘inhibitors’ chi hrang hrang hmanga mi enkawl hi a buaithlak deuh hlek a ni.

He damdawi thar Alhemo an tih hi eng nge thleng?

Alhemo chuan a ti a(concizumab-mtci) hi thisen chhuah tihtlem emaw venna atana pawm damdawi thar a ni a, a bik takin hemophilia A emaw hemophilia B vei, a hmaa kan sawi tawh ‘inhibitors’ nei te tan a ni.

A awlsam zawngin kan taksa hian a pianphungah thisen a tikhawlo thei lo tur protein a nei a. A hming chu TFPI (Tissue Factor Pathway Inhibitor) tih a ni. Kan taksaah ‘traffic cop’ ang maiin han ngaihtuah teh; thisen zam (blood clotting process) a control a ni. Alhemo-in a tih chu he ‘cop’ TFPI tia koh hnathawh hi tlem a tibuai a ni. Tichuan, taksain thisen zam tura puitu factor dang (factor Xa) siam chhuah a tipung a, thisen zam siam theihna a titha leh ta a ni. Hei hian thisen chhuah theihna a ti tlem hle.

Alhemo hi engtin nge kan hman ang?

Alhemo hi nitin subcutaneous injection a ni a . Prefilled pen-ah a awm a, chuvang chuan hman a awlsam hle. I doctor chuan he injection hi in lamah i pe thei tih a rel a nih chuan a tih dan tur dik tak an entir ang che.

• Dose: Inenkawlna ni hmasa berah dose sang deuh (loading dose) pek thin a ni . Chumi hnuah chuan nitin maintenance dose ruat sa chu i ei tur a ni. Dose hi i rih zawng a zirin a ni a, chuvangin i rihna a inthlak chuan doctor hnenah i hrilh tur a ni.
• Test: Inenkawl tan atanga kar li hnuah thisen test i nei ang a, i taksaa damdawi awm zat a dik em tih i enfiah ang. Results a zirin i doctor chuan i dose chu a siamrem thei a ni.
• Vaccine pekna hmun: Vaccine hi pum (navel vel inches 2) emaw, thigh emaw-ah pek thin a ni. Nitin hmun khatah inject lo la, a hmun chu thlak zawk rawh. Hmun natna, hliam, sen, eczema nei, emaw, hliam awmna hmunah inject suh .

A side effects te chu engte nge ni? Engtin nge an hmachhawn ang?

Damdawi dang ang bawkin Alhemo hian side effect a nei thei a ni.

Side effect awm fo thin

Hei hi vaccine a nih avangin injection site reaction tenau te a awm thei. Entir nan:

• Injection na hmuna hliam, sen, itching, emaw thisen chhuak tlem te.
• Hei hi pui turin, chu hmunah chuan compress lum tak i dah thei bawk.
• Hei hi nitin injection na hmun thlak danglam pawhin a tihziaawm theih bawk.
• Doctor rawn hmasa lovin natna tidamtu leh damdawi dang ei loh tur a ni.

Side effect na tak tak – hei hi fimkhur hle ang che!

Heng thisen chhuak kut, ke, lung, thinlungA nih loh leh thluak ang hmuna vein-ah a lo piang thei bawk. Eng surgery pawh i inbuatsaih a nih chuan i doctor hnenah pawh i hrilh tur a ni.

A hnuaia symptoms te hi i neih chuan doctor thurawn la nghal vat rawh:

• Lung na tak tak
• Chest na emaw tightness emaw
• Thâwk harsa
• Thusawi harsa, mit hmuh dan inthlak danglam
• Ke na emaw, a hring emaw

Engtin nge hetiang damdawi bik hi i hmuh theih ang?

Alhemo hi damdawi dawr pangngaia lei theih a ni lo. Hengte hi ‘specialty medicine’ chi khat a ni. Hengte hi hmuh theih nan hian kalphung bik a awm a.

I doctor-in damdawi a pek hnuah specialty pharmacy-in a rawn biak ang che. Damdawi chu i in lama thawn chhuah dan tur chipchiar takin an pe ang che. I insurance company hnen atangin phalna lak hmasak a ngai thei bawk. Damdawi siamtu company aiawh pawhin he thil hi a pui thei mai thei bawk. Heng zawng zawng hi i doctor chuan a kaihruai ang che.