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Neurofibromatosis nooca 1

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

Waa maxay neurofibromatosis nooca 1?

Neurofibromatosis (nur-oh-fie-broe-mah-toe-sis) nooca 1 (oo loo yaqaan NF1) waa xaalad ku keenta maqaarka isbedel iyo weliba burooyin dhinacyada dareemayaasha jidhka. Burooyinkaasi ma aha sida badan kansar.

NF1 waxay ku dhacdaa 1 qof 3,000 ilaa 4,000 ee caruuraba. Illaa 100,000 qof ayaa qaba Maraykanka. NF1 wuxuu isku mid ah u saameeyaa jinsi kasta iyo jaad kasta dadka.

Maxaa keena NF1?

NF1 waa xaalad hidda-socod. Taas macnaheedu waxa weeye waxa keena isbedel ku yimaad hidda-wadaha NF1. Waa lagu dhashaa oo ma jiraan wax looga hortegi karaa. Eeg xaashida waxbarashada, ”Xaaladaha hidda-socodka.”

Qiyaastii badh ahaan dadka qaba NF1 waxay ka dhaxleen hidda-wadaha keena waalidka. Badhka kalena waxa u qabaan sababta oo ah isbedel cusub ee hidda-wadaha. Waxa jira baadhitaan dhiigga ah oo lagu garan karo isbedelada hidda-socodka ee keeni kara NF1. Eeg xaashida waxbarashada ee “xaaladaha hidda-socodka.”

Markuu qof qabaa NF1 leeyahay ilmo, waxa jirta fursad ah 50% inuu ilmuhu helo hiddawadaha NF1.

Sidee lagu ogaadaa?

Si loo ogaado NF1, dhakhtarku wuxu sameeyaa baadhitaan jidheed. Laba arrimmod waa in laga helaa waxyaabaha soo socda si loo go’aansado inuu qof qabo NF1:

  • ugu yaraan 6 barood oo u eg bun caano leh (bar cawlaana). kuwaas waxa badanaa lagu arkaa maqaarka caruurta yaryar, oo laga yaabo in la weynaado korodhka da’da.
  • labo ama ka badan neurofibromas yaryar - buro ku tal maqaarka dushiisa ama hoostiisa. Waxa laga yaabaa in ay soo baxaan qadar yar kahor qaangaadhnimada.
  • ugu yaraan hal plexiform neurofibroma – burooyin waaweyn, oo gun dheer hareeraha dareemayaasha. Marmar lama arki karo ama dareemi karo. Sida badan ma keenaan dhibaato, laakiin qaarkood ayaa isku bedela kansar.
  • cambaar ku taal kilinkilada ama gumaarka.
  • sphenoid dysplasia – lafta isha dusheeda oo qaloocda.
  • tibial dysplasia – lafta lugta hoose oo qaloocda (wagdo).
  • buro ku taal marinka aragga ama optic glioma – buro ama wax kuusan oo ku yaal dareemaha aragga oo lagu arko in ku dhow 10 illaa 15% caruurta qabta.
  • laba ama ka badan dhibco ku yaal wiilka isha “Lisch nodules spots” qaybta midabka leh ee isha.
  • ehel derejada kowaada (hooyo, aabo, walaal, cunugaaga ama gabadhada) oo qaba NF1.

Calaamdaha NF1 qaarkood ayaa laga yaabaa in aanay muuqan illaa waqti danbe nolosha. Taas macnaheedu waa waxa laga yaabo in aan la ogaan NF1 illa waqti danbe nolosha, gaar ahaan haddii aan cidi qabin qoyska.

Ma dhici karaan dhibaatooyin kale?

Dhibaatooyinka soo socdaa waxay aad caan ugu yihiin NF1 oo waxa loo baahan yahay in laga feejignaado oo uu daweeyo dhakhtar ama kalkaaliye sare haddii loo baahdo:

  • itaal darro xagga waxbarashada – ugu yaraan fursad ah 50 %
  • xanuun tirtira fejignaanta “attention deficit disorder (ADD/ADHD)
  • madax ka-weyn kan caadiga ah
  • ka gaaban qof caadi ah
  • hore u qaangaadhka
  • dhiig-kar kacsan
  • tuur (goobe) scoliosis (laf dhab qalooca)
  • madax xanuun

Maxay tahay daaweyntu?

Ma jirto si lagu saadaalin karo dhibaatoyinka uu qabi doono qofka qabaa NF1, ama halista ay dhibaatooyinkaas noqon doonaan. Waxyaabaha lagu garto NF1 waa ku kala duwanaan karaan dad ka mid qoys qudhahi. Dad badan oo qaba NF1 ayaan lahayn dhibaatooyinka caafimaad ee ku taxan xaashidan, oo uu noolaada nolo dheer oo saxo fiican leh.

Raysasho ma leh. Daaweyntu waxay ku xidhan tahay dhibaatooyinka uu qofku qabo.

Dhibcaha u eg bunka caanaha leh iyo canbaartu ma ah dhibaato oo uma baahna daaweyn.

Caruurta iyo waayeelka waa in la qiyaaso tanka dhiigooda si joogta ah. Dhiig karka waxa keeni keeni kara xaaladhan naadirka ah ee laakiin la daaweyn karo:

  • cidhiidhi noqoshada xididada taga kalyaha (renal artery stenosis)
  • buro ka soo baxda qanjidhka kalyaha (pheochromocytoma)

Daaweynta kale waxa ka mid ah:

Dhibaato Daaweyn
ADHD dabiib ah dawo ama dawola’aan ah
itaal daro waxbarasho waxbarasho gaara
tuur (laf-dhabar qalooca) wagdo (lugta inta hoose oo qaloocda daryeel hore oo laga helo orthopaedist (dhakhtar khabiir ku ah lafaha)
neurofibromas haddii ay xanuun yeeshaan ama dhib kale, waa la saari kara
plexiform neurofibroma si feejigan ula soco; haddii uu aad u weynaado, ama noqdo kansar, qaliin ama kiimotarabi ayaa loo baahan doonaa
buro ku taal marinka aragga baadhitaanka joogtada ee indhaha, waa dhif in loo baahdo kiimotarabi

Sideen ilmahayga u daryeelaa?

Waa in dhammaan dadka qaba NF1 uu sannad kasta arko dhakhtar ama kalkaaliye caafimaad oo aqoon u leh xaaladda iyo dhakhtarka indhuhu weliba. Waxa laga yaabaa in loo baahdo tilmaamid khabiiro kale.

Goorma ayaan u wacaa kiliniga?

  • wixii xanuun cusub ee joogta
  • walaacr xagga aragtida iyo madax xanuun
  • walaac xagga waxbarashada iyo anshaxa

Su’aalo?

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

Wixii macluumaad dheeraad ah ee la xidhiidha neurofibromatosis, booqo:

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