I fa te hian a taksaah hian hmun sen lian tak tak a nei em? PHACE Syndrome chungchang hi i zir chiang ang u.

Moms and dads, in fate taksaah, a chang chuan a hmai leh a kawngah, a then chuan a sen lian tak tak emaw, a hring te te in hmuh hian i lungngai a, i hlau mai thei bawk. A châng chuan hengte hi damna tur thil mai a ni a, mahse a tlem berah chuan, PHACE Syndrome ang chi natna hmuh tur awm lo leh eng emaw chen buaithlak tak chhinchhiahna a ni thei. Chuvangin, sawi belh ngai lovin, PHACE Syndrome hi eng nge a nih, eng nge a thlen, chutiang thil a nih chuan eng nge kan tih tur tih chipchiar takin sawi ila.

PHACE Syndrome hi eng nge ni?

Okay, a hmasa berin PHACE syndrome hi eng nge a nih kan en ang. A awlsam zawngin sawi ila, a dinhmun a tlem hle. Chu chu mi zawng zawngah a thleng lo tihna a ni. Pian tirh atanga awm thin, pianpui natna a ni. Chu chu naute pum chhunga a la awm laiin a thleng tihna a ni. Hetiang dinhmun hian naute taksa peng hrang hrang a nghawng thei a ni. Vun, thluak, thinlung, thisen kalna kawng lian ber ber, leh mit a nghawng ber .

A tam zawkah chuan heng hmun tinah hian chhiatna tlemte chauh a awm thin. Naupang thenkhat chuan a hnuaia symptom tarlan te hi tlemte chauh an lantir thei. PHACE syndrome nei naupangte zinga hmuh tam ber chu hemangiomas , cerebrovascular defects, leh heart defects te hi a ni. Chûngte chu naupai lai emaw, nau piang lai emaw, nausen lai emaw pawhin hriat theih a ni.

PHACE hi a takah chuan natna hrang hrang engemaw zat acronym a ni. He syndrome nena inzawm hmasawnna lama harsatna lian ber berte a sawi a ni. A chang chuan PHACES syndrome an ti bawk. Extra 'S' hi sternal clefting tihna a ni. Chumi awmzia chu rilru lai tak, sternum-a ruh chu a lo insiam tha lo a, a nih loh leh a chhungah chhiatna engemaw a awm tihna a ni.

PHACE syndrome natna lan chhuah dan chu engte nge ni?

Chuti a nih chuan, naupang PHACE syndrome vei hian eng symptoms nge a neih? Hei hi naupang tinah a inang lo thei. Naupang thenkhat chuan symptoms an nei tlem zawk a, thenkhat chuan an nei tam zawk. Tin, a natna lan chhuah dan nasat dan pawh naupang pakhatah a inang lo bawk. A lan chhuah dan ber chu eng nge ni tih i lo en ang u:

• Hemangiomas: Hei hi vunah hmuh theih, rawng danglam tak tak a ni. A nihna takah chuan thisen kalna kawng dang ( extra blood vessels ) lo thang lian atanga lo piang an ni . Lu vun, hmai, kawr, taksa leh kut ah te hmuh tur a tam ber. A tlangpuiin an lian hle a, an darh thei bawk. Mahse, a chang chuan heng hemangiomas te hian naupang chhungril lam pawh a nghawng thei bawk. Chutiang a nih chuan mit leh hriatna lama harsatna a awm thei.

• Thluak lama thil dik lo awmte: 1.1.Posterior fossa hi thluaka hnathawh pawimawh tak tak, balance, coordination leh thawk dan control tu a ni. Hemi kawngah hian thil dik lo a awm chuan naupang chu a duh loh zawnga chetna leh rilru lama harsatna nei thei a ni . Tin, thluak insiam danah pawh inthlak danglamna a awm thei bawk.

• Heart abnormalities: Lung chhiatna thenkhat hian thawk hah , taksa ruh chak lohna , thisen sang , lungkham fo, leh thawk hah ang chi symptoms a thlen thei. A châng chuan naute thinlung hi a lo ṭhang kim lo va, thinlung chamber inkarah khur a awm thei bawk (ventricular septal defect) . A nih loh leh, aorta a narrowing (aorta coarctation) a awm thei bawk.

• Arterial abnormalities: Thluak leh kawr thlenga thisen phurtu thisen kalna kawngte chu a zim emaw, thil danglam dang a awm emaw chuan thluak hian thisen a hmu tlem thei a ni. Hei hian natna hlauhawm tak tak, aneurysms , seizures , stroke , emaw taksa sir khatah hriatna hloh emaw a thlen thei a ni.

• Mit dik lo: Naute mit, mit nerve emaw, mit chhunga thisen kalna kawngte chu a lo thang tha lo thei a ni. Hei hian mitdelna, mit hmuhna hloh , mit te tak te , mit chetna thunun theih loh, emaw mit tlakchhamna a thlen thei a ni.

• Breastbone abnormalities: A hmaa kan sawi tawh ang khan naute rilru lai takah hnute ruh (sternum) chu a bo emaw, a lo thang tha lo emaw a ni thei. Hei hian chu hmunah chuan crack, bumps leh pits a siam thei a ni.

PHACE syndrome avanga harsatna awm thei te

PHACE syndrome nei naupangte hian an taksa insiam dan leh thisen kalna kawng hrang hranga heng thil danglam te avang hian harsatna engemaw zat an nei tam zawk a ni. Hengte hi an ni:

• Balance chungchang a ni
• Ha lama harsatna, entirnan , enamel hypoplasia leh ha zung dik lo.
• Chaw ei harsa
• Endocrine system a dik lo. Entirnan, thyroid hnathawh a tlahniam leh hormone siam chhuah a tlahniam.
• Lu na fo thin, a chang chuan migraine .
• Hmasawnna \ha lo
• Thusawi leh tawng tihkhawtlai
• Stroke vei theihna a sang .
• Reproductive organs hmasawn lo tak tak te

Eng thilin nge PHACE syndrome hi a thlen?

Naute thenkhatin PHACE syndrome an neih chhan hi zirchiangtute chuan an la hre chiang lo. Zirna hrang hrangah chuan genetic leh environmental factors pahnih avanga lo awm a ni thei tih a tarlang. Mahse, a thlentu genetic variation dik tak chu a la chiang lo. Mithiam thenkhat chuan nau pai lai a random (de novo) gene change avanga lo awm niin an ngai. Chumi awmzia chu nu leh pa atanga rochun a ni tlangpui lo tihna a ni.

Engtin nge PHACE syndrome hi hmuhchhuah a nih?

Okay, chuti a nih chuan engtin nge doctor te hian PHACE syndrome hi an hriat theih ang? A tlangpuiin doctor chuan taksa enfiahna uluk tak a nei ang a, test engemaw zat a nei ang . They have specific diagnostic criteria , chu chu kaihhruaina set a ni. Chutiang chuan naupangin PHACE syndrome a neih leh neih loh an rel thin.

A châng chuan, doctor-te chuan i naupai laiin scan i neih aṭangin i dinhmun hi an hre thei a ni. Mahse, hun dangah chuan naute pian hnuah emaw, nausen hnuah emaw a lang lo thei.

Vawi tam tak chu doctor chuan naupang taksaah hemangioma lian tak a zawng hmasa ang a, a bik takin a hmai, a kawr emaw, a lu vunah emaw a ni. Hemangioma pakhat leh PHACE nena inzawm key feature dang pakhat tal awm hi diagnosis atan a tawk mai thei.

Chu bâkah, naute thluak, thinlung, thisen kalna kawng leh mitte ngun zâwk tûrin test eng emaw zat tih theih a ni bawk. Hengte hi test tih dan tlangpui chu a ni:

• CT scan hmanga tih a ni
• Echocardiograms – Hei hian thinlung insiam dan leh hnathawh dan a en a.
• Mit enfiahna – mit lam doctor-in a enfiah thin.
• Hriatna test neih a ni
• MRI scan – Thlalak chipchiar tak tak la, a bik takin thluak leh thisen kalna kawngte.
• Ultrasound hmanga scan a ni

PHACE syndrome hi engtin nge enkawl a nih?

PHACE syndrome enkawlnaah hian harsatna awm thei venna leh naupang chu an natna lan chhuah dan pangngaia nunpui tura puih hi a pawimawh ber a ni. Enkawl dan hi a natna hian eng taksa peng emaw, taksa peng emaw a nghawng dan azirin a inang lo.Chu chu naupang zawng zawng hian enkawlna inang an dawng vek lo tihna a ni.

Hetiang enkawlna hi a tlangpuiin:

• Vun-a hemangiomas awmte chu laser hmanga enkawlna emaw, a tihtlem nan damdawi (e.g., beta-blockers propranolol ang chi) pek emaw a ni.
• Sikul-a zirlai pui turin special education , speech therapy, leh physiotherapy pek.
• A châng chuan thinlung, thisen kalna, thluaka chhiatna awmte siam ṭhat nân zai a ngai ṭhîn.
• Epilepsy, lu na leh hormone inthlauhna control nan damdawi chi hrang hrang pek.
• Hriatthiam lohna atana puitu hmanrua leh mitdelna atana glasses pek.

Chhungkaw tam tak chuan an fate enkawlna tur kawng hrang hrang hriat belh tumin genetic counselor an bia a, chubakah an lo puitlin huna an tanpui theih dan tur pawh an sawi bawk. Hei hian a \angkai hle thei a ni.

Hei hi ven theih a ni em?

Vanduaithlak takin PHACE syndrome hi ven dan tur a awm lo. A chhan dik tak hriat a nih loh avangin he natna vei fa neih theihna tur tihziaawmna tur engmah i tih theih loh.

Mahse, i fa neih theihna chance chungchang hriat belh i duh chuan, i doctor nen genetic testing neih chungchang i sawi thei ang .

Ka fa hian PHACE syndrome a neih chuan eng nge thleng ang? Eng nge beisei tur?

I fa hian he natna hi a neih chuan an primary care physician leh field hrang hranga specialist (e.g., cardiologist, neurologist, ophthalmologist) te hnenah an symptoms te hian an nunphung a nghawng lo em tih enfiah fo a ngai dawn a ni. Hei hi hun rei tak enkawl ngai dinhmun a ni.

Hetiang dinhmun hian naupang chauh ni lovin, nang leh chhungkaw dangte pawh a nghawng thei a ni. Chuvang chuan i rilru hrisel dan tur ngaihtuah a pawimawh hle. Mi thenkhat chuan rilru lam hriselna lama mithiamte biak hian hahdamna leh chakna nasa tak an hmu thin .

Chuti a nih chuan he natna vei hi engzat nge a dam rei ang ? Naupang natna lan chhuah dan a nasat dan leh natna hian eng taksa peng nge a nghawng tih ah a innghat tak zet a ni.

Naupang thluak leh thinlung natna nasa tak nei te hi an dam rei zawk a ni. Mahse, naupangin symptoms na lo tak tak a neih a, enkawl that a nih chuan nun pangngaiin a nung thei a ni.

Engtikah nge doctor i hmuh ang?

I fain a hnuaia mite hi a neih chuan doctor pan ngei ngei tur a ni:

• Ei leh in harsatna i neih chuan
• Naupangin an kum nena inmil taka hmasawnna milestone a tlin loh chuan, chu chu a lo thanglian tlai a nih chuan (e.g., a hun taka a kawr a vawn loh, kal loh, tawng lo).
• Thil hmuh theiha i chhan loh chuan , chu chu i mitmenga thil mak i hmuh chuan a ni.
• I taksaah hmun lian tak, flat, sen (hemangioma ang chi) i hmuh chuan.

Engtikah nge i fa chu damdawi inah i hruai vat ang?

Hetiang thil i hmuh chuan i fa chu emergency room hnai ber ah hruai nghal rawh , a nih loh leh 1990 ah call rawh:

• Stroke chhinchhiahna i lantir a nih chuan (e.g. hmai sir khata tla nghal, kut hnathawh hloh, tawng thei lo).
• Seizure i neih chuan.
• Thâwk harsa i neih chuan, thawk hah ang maia i inhriat chuan.
• Lungphu a mumal lo a nih chuan, emaw, naute chu a sen a nih chuan.

Zawhna zawh tur doctor/mrs.

Hetiang zawhna hi i fa doctor emaw nurse emaw hnenah i zawt thei ang. Chûngte chuan dinhmun hrethiam tûrin a ṭanpui ang che:

• Ka fa hian PHACE syndrome a nei tak tak em? A finfiah theih nan test dang ka tih a ngai em?
• Ka fa hian operation a mamawh em ? A nih chuan engvangin nge leh engtikah nge?
• Ka fa hemangioma tihbo nan damdawi a awm em ? A dam vek dawn em ni?
• Heng enkawlnate hian side effect a nei em? Eng nge an nih?
• Naupang tâna kan fimkhur bîk tûr thilte chu engte nge ni?
• Ka fa dam rei zawng chu eng ang nge ni ang?
• Hetiang dinhmun nei hian naupang hian nun pangngai a hmang thei dawn em ni?

A tawp berah chuan thil hriat reng tur

I fain natna hlauhawm tak a nei tih i hriat a, chu chu i hriat tam loh chuan i mangang hle thei a, i lungngai hle thei a, i hlau hle bawk. Rin a har takzet. Hei hian nang leh i chhungte rilruah nghawng lian tak a nei thei a ni.

Naupang thenkhat chu he natna nei hian puitlin thlengin an dam tha hle. Mahse, mi dangte tan chuan natna lanchhuahna na tak avangin dam rei zawng hi a tawi thei a ni. Support group-a tel emaw, genetic counselor emaw mental health professional emaw nena inbiakna neih hi he hun chhung hian nang leh i chhungte tan thlamuanna leh chakna nasa tak a ni thei. Chuvangin chu tanpuina chu dawng hreh suh.

Nangmah chauh i ni lo tih hre reng ang che. Heng harsatnate hi hmachhawn thei tur, i zawhnate ngaithla thei tur leh i mamawh thu hriatna pe theitu doctor, nurse leh mi dang tam tak an awm a ni. Chuvangin, chak takin awm la, i fate mamawh tha ber pek tum ang che.

` PHACE syndrome, hemangioma, pianpui natna, thluak dik lo, thinlung lam chhiatna, thisen kalna kawng dik lo, mit dik lo, genetic natna, natna hmuh tur awm lo, naupang hriselna