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Xanuunka “Tuberous sclerosis complex”

Article Translations: (English) (Spanish) (Hmong)

Waa maxay tuberous sclerosis complex (TSC)?

Tuberous sclerosis complex (too-ber-us sklair-oh-sis com-plex), waa xaalad ku keenta maqaarka isbedel iyo weliba burooyin (soo-bax) gudaha maskaxda, kalyaha, wadnaha, indhaha iyo sanbababada. Burooyinkaasi ma aha sida badan kansar.

TSC waxay ku dhacdaa 1 qof 6,000 ee caruura dhalata. Illaa 50,000 qof ayaa qaba Maraykanka. TSC wuxu ku dhacaa dhamaan jinsiyad iyo jaad kasta.

Maxaa keena TSC?

TSC waa xaalad hidda-socod. Taas macnaheedu waxa weeye waxa keena isbedel ku yimaad hidda-wadaha TSC. Waa lagu dhashaa oo ma jiraan wax looga hortegi karaa. Eeg xaashida waxbarashada, ”Xaaladaha hidda-socodka.”

Qiyaastii saddex-dalool meel ahaan dadka qaba TSC waxay ka dhaxleen hidda-wadaha keena waalidka. Labada kale kalena waxa ku keenay sababta oo ah isbedel cusub oo ku yimid hidda-wadaha.

Markuu qof qabaa TSC leeyahay ilmo, waxa jirta fursad ah 50% inuu ilmuhu helo hiddawadaha TSC.

Sidee lagu ogaadaa?

Dhakhtarku wuxu sameeyaa baadhitaan jidheed iyo baadhitaano dhawra oo lagu eegayo haddii ay qaybo jidhka ah ku yaalaan burooyin iyo soo-baxyo gudaha. Calaamadahu maadaama ay waqti qaataan in ay ku muuqdaan, waxa laga yaabaa in aan la ogaan karin illaa waqti danbe nolosha qofka, gaar ahaan markaan qof kale ka qabin qoyska.

Qofku waa qabaa TSC haddii laga helo iskutagga sifooyinka soo socda qaarkood:

       
Sifooyinka  
Weyn Yaryar Ogaanshaha TSC?
2     haa
1 + 2
1 + 1 suurtogal
1 ama 2 iyo ka badan laga yaabaa

Sifooyinka weyn

Isbedelada maqaarka:

  • wax ka soo baxa wejiga “facial angiofibromas” – wax yaryar oo guduudan oo wejiga ku yaal, gaar ahaan agagaarka dhabanada iyo sanka. Waxay u eg yihiin finan.
  • qolof (maqaar adag) oo ku yaal wejiga ama salxanta.
  • ungual fibromas – buurbuur ama burooyin ku yaal salka ama hoosta cidiyaha faraha iyo lugaha.
  • saddex ama ka badan hypomelanotic macules (gabalo maqaar khafiifa) oo ku ooli kara meel kasta, qiyaas kasta, iyo qaab kasta.
  • shagreen patch – gabal maqaar adag oo godan oo leh taabshada diirka liinta, sida badana ku yaal dhabarka dhankiisa hoose.

Isbedelada maskaxda:

  • cortical tubers – qaybo ka mida dusha sare ee maskaxda oo aan u korin si saxa. Waxay u eg yihiin bar ku taal maskaxda, oo keeni kara qalayl (suuxitaan).
  • subependymal nodules waa cad yar oo ku yaal meel ku dhaw gidaarada ventricles (oo ah jiidda madhan ee uu ku jiro dheecaanka maskaxdu). Cadkaasi sida badan wuu weynaadaa bilaha ugu horraysa ee qofka noloshiisa ama sannooyinka hore ee nolosha, laakiin ma keeno suuxitaan.
  • Subependymal Giant Cell Astrocytoma (SEGA) – waa buro weyn oo ka soo baxda gudaha illaa 15% dadka qaba TSC.

Burooyinka (gudaha) ee kale:

  • multiple retinal nodular hamartomas (isbedelada indhha gudahoo).
  • cardiac rhabdomyomas – burooyinka wadnaha gudihiisa. Inta badan waxa lagu arkaa ilmaha iyo caruurta yaryar, kuwaasi oo sida badan sii yaraada ama baaba’ markuu qofku koro.
  • lymphangiomyomatosis (LAM) – wax ka soo baxa sanbabyada, oo inta badan lagu arko dumarka da’doodu u dhaxayso 20da illaa 30da.
  • renal angiomyolipoma – burooyinka gudaha kalyaha. 70-80% dadka waaweyn ee qaba TSC ayaa leh kuwaas.

Sifooyinka yaryar:

  • daldaloolo ilkaha.
  • hamartomatous rectal polyps (wax ka soo baxa malawadka).
  • wax ka soo baxa lafaha.
  • khadadka maadada cad ee maskaxda (isbedelka maskaxda).
  • gingival fibromas (cirid adayg agagaarka ilkaha).
  • non-renal hamartoma (wax ka soo baxa xubnaha jidhka meel kasta oo aan kansar lahayn).
  • retinal achromic patch (isbedelka isha dhankeeda danbe).
  • “confetti” wax cadcad oo maqaarka ku yaala (dhibco badan oo cadcad).
  • wax ka soo baxa kalyaha.

Waxa jira baadhitaano dhiig ah oo lagu garto isbedelada hidda-socodka ee keeni kara TSC. Eeg xaashida waxbarashada, “Xaaladaha hidda-socodka.”

Ma dhici karaan dhibaatooyin kale?

Dhibaatooyinka soo socdaa waxay aad caan ugu yihiin TSC oo waxa loo baahan yahay in laga feejignaado oo uu daweeyo dhakhtar ama kalkaaliye sare haddii loo baahdo:

  • dhibaato xagga anshaxa, sida autism
  • daahitaan xagga koriinka
  • qalaylka (suuxitaanka)

Maxay tahay daaweyntu?

Dawo ma leh. Daaweyntu waxay ku xidhan tahay dhibaatooyinka qofka haysta kuwaas oo ay ka mid noqon karaan:

Dhibaato Daaweynta
dhibaatooyin anshaxa dabiib daawo iyo daawola’aana
daahitaan koriinka waxbarsho gaara, dabiib dib-u-habyan ah
isbedelada indhaha baadhitaano indhaha oo joogto ah
wax ka soo baxa sanbabyada (dumarka) raajada CT scan ee sanababka kahor 18 jir
suuxitaan dawo ama qaliin
isbedel maqaarka daaweynta laysarka ee dermabrasion
burooyin iyo soobaxyo baadhitaano joogta, raajada CT scans, suurtagal qalliin

Sideen ilmahayga u daryeelaa?

Waa in dhammaan dadka qaba TSC uu sannad kasta arko dhakhtar ama kalkaaliye caafimaad oo aqoon u leh xaaladda iyo dhakhtarka indhaha weliba. Waxa laga yaabaa in loo baahdo tilmaamid khabiiro kale.

Goorma ayaan u wacaa kiliniga?

  • wixii qaleel cusub (suuxitaan) ama aan la kontrooli karin
  • dhiig ku jira kaadida
  • wixii xanuun cusub ee joogta
  • walaac xagga waxbarashada iyo anshaxa

Waa maxay waxa kale ee aan rabo inaan ogaado?

Ilmahaagu wuxu maqaarka ku yeelan karaa dhibco u eg bun caano leh (cawlaan khafiifa). Kuwaasi ma laha waxyeelo.

Waxa laga yaabaa in sifooyinka TSC ay ku kala duwanaadaan dad qoys qudha ka soo wadajeeda. Ma jirto si lagu saadaalin karo dhibaatoyin uu qabi doono, ama khatartu xoogga ay yeelan doonaan dhibaatooyinkasu. Dadka qaar waxay yeelan karaan isbedelada maqaarka oo keliya. Dad kalena waxay yeelan karaa dhibaatooyin badan. Dhibaatooyinka qaar ayaa yimaada nolosha qofka inteeda danbe.

Su’aalo?

Xaashidani gaar kuma aha ilmahaaga, laakiin waxay bixinaysaa macluummad guud. Haddii aad wax su’aalo ah qabto, fadlan wac kilinigaaga.

Wixii akhris ah ee la xidhiidha arrintan iyo mawduucyada kale ee caafimaadka, fadlan wac ama booqo kaydka-buugaagta ee Xarunta Qoyska “Family Resource Center”.

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This page is not specific to your child, but provides general information on the topic above. If you have any questions, please call your clinic. For more reading material about this and other health topics, please call or visit Children's Family Resource Center library, or visit www.childrensmn.org/educationmaterials.

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