I taksa pum puiah lumps i nei em? Tuberous Sclerosis Complex (TSC) chungchang hi han sawi ila

I fate taksaah hian rawng hring tlemte i hmuh thut khan i hlau hle mai thei. A nih loh leh, chhan awm lovin seizure ang chi symptom pakhat i ngaihtuah a ni thei bawk. Hengte hi a chang chuan natna langsar lo tak Tuberous Sclerosis Complex (TSC) an tih chhinchhiahna a ni thei bawk. A hmasa berin hlauthawng suh. Hemi chungchang hi hriatthiamna chiang tak i neih hnuah chuan he dinhmun hi hlawhtling takin i nung thei tawh ang. Engkim hi a awlsam zawngin sawi ila.

A awlsam zawngin, Tuberous Sclerosis Complex (TSC) hi eng nge ni?

Hetiang hian han ngaihtuah teh: kan taksaa cell-te hi hnathawhna hmuna hnathawkte ang an ni. An mamawh hunah an inthen a, an thang lian a, an tih zawh chuan an inthen tawh lo. Mahse TSC vei mi pakhatah chuan heng cell inthenna control tu process-ah hian defect tenau tak a awm a. Chuvangin, an awmna tur hmuna ding lovin, cell te chu an inthen darh zel a ni.

Chutianga cell-te chu thunun theih loha an inṭhen chuan taksa hmun hrang hrangah, entîr nân, thluak, kal , thinlung , lung , vun, leh mit-ah te, tumor a lo awm a ni. Hetah hian i hriat tur pawimawh ber chu heng tumor te hi cancer an ni lo tih hi a ni . Mahse an siamna hmun a zirin harsatna hrang hrang an thlen thei. Khawvel hmun hrang hrangah mi maktaduai khat atanga maktaduai hnih vel chu he natna hi neiin an khawsa a ni. Thu lawmawm tak chu tunlai hian heng symptoms te control tur leh tumor te tihtlem nan enkawlna tha tak tak a awm tawh a ni.

TSC awm chhan bik chu eng nge ni?

Hei hi a chhan ber chu kan genes inthlak danglamna (mutation) vang a ni . Hei hi kawng hnih in a thleng thei.

1. Random genetic change: Mi tam zawk tan chuan hmun thuma ṭhena hmun hnih vel chu TSC hi rochun a ni lo. Nu leh pa cell inzawmkhawmin naute an siam a, naute chu embryo anga a lo thanglian chhoh lai hian genes random change vang a ni thei.

2. Nu leh pa atanga rochun: Mi hmun thuma ṭhena hmun khat velin an nu leh pate hnen atangin he natna hi an rochun thin. Nu leh pa pakhatin TSC an neih chuan an fain natna a vei theihna chance 50% a nei a ni.

Eng nge a lan chhuah dan? Mi zawng zawng tan an inang em?

No. TSC natna lan chhuah dan hi mi hrang hrangah a inang lo hle. Tin, heng symptoms te hi hun kal zelah a danglam thei bawk. Mi thenkhat chuan an pian hnuah pawh symptom an nei tan nghal mai. Mi dangte tan chuan nakin lawkah an lo lang thei a ni. A lan chhuah dan chu tumor awmna hmun, a lian leh te a zirin a ni.

Hriatthiam awlsam zawk nan hei hian taksa peng hrang hrang a nghawng dan i lo en ang u.

Engtin nge doctor hian he natna hi a hriat chian tak tak?

He natna lan chhuah dan hi a inang lo em em a, a chang chuan hriatchhuah a buaithlak deuh thei bawk. I doctor chuan uluk takin a sawi hmasa ang che a, a chipchiar zawngin a zawt ang che. Entir nan:

• Eng danglamna nge i hriat hmasak ber? Engtik lai khan nge a intan?
• Nangmah emaw i fa emaw hian seizure i nei tawh em ? I neih chuan eng nge thleng? Eng chen nge a lo awm tawh?
• Engzat nge lu na i neih?
• Chhungkaw zingah hian mi dangin seizures emaw TSC emaw an nei em?

Chumi hnuah chuan doctor chuan i vun leh mit a enfiah ang a, a tul chuan test eng emaw zat neih belh leh turin a refer ang che.

• CT Scan : X-ray hrang hrang hmangin taksa chhungril chipchiar taka thlalak lak a ni. Hei hian tumor zawng turin a pui thei a ni.
• MRI Scan: Hei hian CT scan aiin thlalak chiang zawk, chipchiar zawk a siam thei a ni. Thluak leh ruhroa tui kal dan pawh a en thei. A châng chuan a lemte chiang zâwk tûrin dye bik an inject ṭhin.
• Echocardiogram: Hei hi thinlunga ultrasound test a ni. Lung chhunga tumor leh thildang dang a awm leh awm loh a enfiah thei a ni.
• Gene test: He test hi thisen sample hmanga tih a ni a, TSC i neih leh neih loh chu chiang takin a nemnghet thei a ni.

Enkawlna kawng hrang hrangte chu engte nge ni?

Enkawlna chu i natna lan chhuah dan leh tumor awmna hmunah a innghat a ni. Doctor-te thil tum ber chu i natna lan chhuahna (symptoms) control a, nun nuam tak i neih theih nan tanpui che hi a ni.

• Kidney tan: Damdawi (`everolimus` ang chi) hi kidney tumor-a thisen kalna tur tihtawp nan emaw, tihtlem nan emaw pek thin a ni. A chang chuan tumor te hi surgery hmanga lakchhuah a ngai thei bawk. A nasat chuan dialysis emaw, kal thlak emaw a ngai thei.
• Thluak tan: Thluaka tumor thenkhat chu damdawi hmangin a te zawkin siam theih a ni. Seizures control nan damdawi bik a awm bawk. Tumor thenkhat chu surgery hmanga lakchhuah a ni. Naupang seizure hi a hmaa enkawl a nih chuan an thluak thanlenna leh zir theihna kawngah nasa takin a pui thei a ni.
• Lung tan: Lung lama harsatna nei thenkhat chu taksa hriselna tichhe thei damdawi, sirolimus ang chi an pe thin.
• Vun tan: Skin bumps leh blemishes te hi a lian hmain laser treatment (dermabrasion) ang chi thil hmangin a tifai thei.

TSC nena khawsakna hmuna i hriat tur thilte

Hetiang natna khirh tak nena nun hi rilru lama harsatna a ni thei a, mahse uluk taka enkawl a nih chuan nun hlawhtling tak i nei thei a ni.

• Mahni in enkawl rawh: I taksaa inthlak danglamna hi ngun takin ngaihven rawh. Symptom thar a awm chuan doctor hnenah hrilh nghal rawh. Damdawi ei tur chu a hun takah ei la, doctor appointment pawh pelh suh.
• Emergency-ah inbuatsaih rawh: Emergency-a tih tur leh ETU (Emergency Treatment Unit) pan hun tur chiang taka hriat theih nan i doctor nen inbiakna nei rawh .
• I fa chu naupang ni rawh se: I fain TSC a neih chuan naupang an la ni tih theihnghilh suh. An khelh theihna tur, an zir theihna tur leh an hlim theihna tur boruak siam rawh.
• Chhungte leh \hiante \anpuina: He dinhmun hi i chhungte leh i \hiante hnai tak takte nen sawiho rawh. Engtin nge an tanpui theih che tih zawt rawh.
• Rilru hriselna: A chang chuan stress leh lungngaihna hi thil pangngai tak a ni. Hetianga i inhriat chuan counselor hnen atangin tanpuina zawng hreh suh.

TSC hi damdawi kimchang la awm lo mah se, enkawl leh enkawl dan dik a nih chuan he natna vei tam zawk hi chu nun pangngai, thawkrim leh mahni inrintawkna neiin an nung thei a ni.