As mama ɔ papa, we yu tink bɔt yu smɔl pikin in wɛlbɔdi, ivin di smɔl tin kin fil big, nɔto so? εspεshali we dכkta se, "Sכmtin lεk sכmכl tכmכro de na yu pikin in at," i kin mek yu at brok. Bɔt nɔ wɔri . Tide wi go tɔk bɔt wan kɔndishɔn wae yu kin yɛri bɔt sɔm kayn tin lɛk dis, bɔt bɔrku tɛm nɔr kin denja. Dat na di sik we dɛn kɔl Cardiac Rhabdomyoma .
Wetin na Kadyak Rhabdomyoma?
Fɔ tɔk am simpul wan, kadyak rabdomyoma na wan kayn tumbu we nɔ gɛt kansa ɛn we kin kam na yu pikin in at mɔsul . Dɛn tin ya nɔ kin apin so ɔltɛm. bכt, i sכprayz, dεn na di mכst kכmכ n tכmכro fכ di at we de divεlכp di tεm we di pikin de fכm, dat na we di pikin stil de na di mama in bεlε (`gεstεshכn`). Bɔku tɛm, dɛn kadyak rabdomyomas ya kin apin we di pikin stil de na di bɛlɛ ɔ insay di fɔs ia we i de liv.
Dɛn tɔŋ ya kin kɔmɔt frɔm di at mɔsul insɛf. Wetin spɛshal na dat, bɔku tɛm dɛn nɔ kin si dɛn wan, bɔt dɛn kin si dɛn togɛda . Dis na wetin de mek dɛn difrɛn frɔm fibromas, we na ɔda kayn tumbu we nɔ de du bad ɛn we de divɛlɔp na di at. biכs di fibroma dεm de kכmכt bak frכm di at mכsul insεf, bכt dεn de kכmכt lεk wan tכmכro, nכto insay kכlכsta.
Di impɔtant tin na dat di kadyak rabdomyomas nɔto bad bad ɔ kansa . Dis min se dɛn nɔ de skata to ɔda pat dɛn na di bɔdi. Di wangren we aw dɛn kin denja na if dɛn ambɔg di nɔmal wok we yu pikin in at de du. Bɔt dat nɔ kin apin so ɔltɛm. Bɔrku tɛm, dɛn tumbu ya kin shrink ɛn go fɔ dɛnsɛf ɛn nɔr kin kam wit siriɔs prɔblɛm.
Dɛn tumbu ya kin kam na di rayt ɔ lɛft say na pikin in at. dεn kin fכnshכn mכst na di lכw chεmba dεm na di at , di rayt vεntrikl כ di lεft vεntrikl . Sɔntɛnde dɛn kin kam bak na di ɔpa chɛmba dɛn na di at, di atria , ɔ na di wɔl we de sheb di tu chɛmba dɛn. di saiz fכ di tכmכro kin difrεn frכm fכ milimita to sεvεra sεntimita. Dɛn kin tan lɛk yɔlɔ ɔ wayt to yu yay.
di kadyak rabdomyoma na wan benign, nכn kεnsar tכmכro we de fכm insay kכlכsta dεm na di at mכsul.
Udat dɛn kin gɛt dis sik mɔ?
Bebi ɛn pikin dɛn we gɛt wan sik we dɛn kɔl tuberous sclerosis kin gɛt mɔ risk fɔ gɛt kadyak rabdomyomas. Infakt, lɛk 8 pan ɛvri 10 pikin dɛn we gɛt kadyak rabdomyomas kin gɛt tuberous sclerosis bak. Tuberous sclerosis na bak wan jεnεtik kכndyushכn we rili rεs. Fɔ ɛgzampul, i kin ambɔg lɛk 1 pan ɛvri 6,000 pikin dɛn we dɛn jɔs bɔn na Amɛrika.
Risach nɔr dɔn fɛn ɛni pruf fɔ se man ɔ uman, rays, ɔ etnik grup kin afɛkt di we aw dis sik kin apin.
Aw dis sik kin kɔmɔn?
di kadyak rabdomyomas na di kayn at tכmכro we kin kכmכn pan bεlε pikin dεm εn yכŋ pikin dεm. Bɔt ɔl togɛda, di tɔŋ dɛn we de na di at nɔ kin bɔku so dɛn kin tek di rabdomyomas na di at as tin dɛn we nɔ kin apin . di tכmכro dεm we de stat na di at insεf (dεn kכl dεm `primary cardiac tumor`) de afekt fכ sכm wan pan 2,000 pipul dεm.
Wetin mek di kadyak rabdomyoma kin kam?
Dɛn kin tink se di kadyak rabdomyomas kin kam bikɔs ɔf di chenj dɛn we kin apin na di jɛnɛtiks we kin apin bifo dɛn bɔn am . Dɛn chenj ya we de apin na di jɛnɛtiks kin mek bak wan sik we dɛn kɔl tuberous sclerosis. Pipul dεm we gεt tuberous sclerosis gεt mכtεshכn na di jin dεm `TSC1` כ `TSC2`. di men wok we dεn tu jin dεm ya de du na fכ kכntrכl di fכmeshכn fכ di tכmכro dεm na di bכdi. So, bɔku pikin dɛn we gɛt kadyak rabdomyomas kin gɛt tuberous sclerosis bak.
Bɔt sɔm pikin dɛn kin gɛt kadyak rabdomyoma we nɔ gɛt tuberous sclerosis. If dɛn kayn tin ya apin, dɛn nɔ dɔn fɛn di rayt tin we mek dis tumbu de kam yet .
Dis na sɔntin we kin kɔmɔt frɔm we dɛn bɔn am? Yu tink se na frɔm dɛn gret gret granpa dɛn?
Cardiac rhabdomyoma na tin we pɔsin kin bɔn wit . So, dɛn kin tek am se na tin we dɛn bɔn wit. Bɔt i nɔ di sem wit di tin dɛn we pɔsin kin gɛt frɔm in mama ɛn papa . If wan sik na tin we pɔsin kin gɛt frɔm in mama ɛn papa, i kin pas tru di famili jin.
Cardiac rhabdomyoma kin kɔmɔt frɔm am, bɔt i nɔ kin apin. dis na biכs di jεnεtik kכndyushכn we dεn kכl tuberous sclerosis, we kכl dis tכmכro, kin apin bכku tεm fכ insεf, we nכ gεt εni ɛritayt link.
Mama ɔ papa we gɛt tuberous sclerosis gɛt 50% chans fɔ pas am to dɛn pikin. כltu, dεn kin si dis "inhεritεns" pan כnli bכt wan tכd pan di tuberous sclerosis pasεnshכn dεm. Bɔku ɔda kes dɛm, di jɛnɛtik muteshon kin apin fɔ di fɔs tɛm pan pikin we dɛn jɔs no bɔt , we nɔ gɛt famili histri. Dis min se sɔmtɛm, kadyak rabdomyoma kin apia lɛk aw dɛn bin de ɛkspɛkt, ɛn sɔm tɛm dɛn kin apin lɛk wan random tin we nɔ gɛt ɛni wɔnin sayn.
Dis kin tan lɛk se i kɔmplikt, bɔt mɛmba se di jin dɛn na jɔs wan pat pan di stori. If yu gɛt ɛni kwɛstyɔn ɔ wɔri bɔt kadyak rabdomyoma ɔ tuberous sclerosis, mek shɔ se yu tɔk to yu dɔktɔ . Tɔk bɔt yu famili istri ɛn aw i go afɛkt yu ɔ yu pikin.
Wetin na di sayn dɛm fɔ dis?
Bɔrku tɛm, kadyak rabdomyoma nɔr kin kɔz ɛni sayn.. Bɔt i nɔ kin apin so ɔltɛm, if wan tumbu ɔ wan grup we gɛt tumbu dɛn big, i kin mek prɔblɛm insay di pikin in at ɛn mek i gɛt sɔm sayn dɛn. Fɔ ɛgzampul, big big tumbu kin mek di blɔd nɔ flɔ ɔ i kin mek di at nɔ wok fayn. if dis apin we uman bεlε, i kin rili bad to di pikin we de insay di bεlε. I kin mek yu at nɔ wok fayn ɔ wan siriɔs sik we dɛn kɔl haydrop .
Bɔku tɛm yu dɔktɔ go chɛk fɔ dɛn kayn prɔblɛm ya we yu gɛt bɛlɛ wit imej tɛst.
if dεn tכmכro dεm ya na bεlε εn yכŋ pikin dεm nכ go f כ dεn wan εn i de kכntinyu, כ if dεn de gro big, dεn kin mek dεn at fεl כ dεn at bit nכ de bit (arrhythmias). Dis na tin bak we nɔ kin apin so ɔltɛm. Bɔt yu pikin in dɔktɔ go wach dis sik fɔ si if ɛni prɔblɛm kam.
If yu pikin sho ɛni wan pan dɛn sik ya, kɔl 1990 wantɛm wantɛm, ɔ kɛr am go na di ɔspitul we de nia yu:
- Chenj na di at ritm.
- Hat de bit kwik kwik wan ( tachycardia ).
- I nɔ izi fɔ blo ɔ we yu nɔ de blo shɔt, mɔ we yu de ledɔm ( dyspnea ).
- Chɛst pen ɔ tayt we yu kin pul we yu sidɔm.
- Kɔf.
- Diziz ɔ fɔdɔm.
- Fɔ fil se yu taya ɔ yu wik.
- Swel na di leg, ankles, ɔ bɛlɛ.
Aw yu no dis?
Dɛn kin no se pɔsin gɛt kadyak rabdomyoma tru imej tɛst . Dɛn kin du dɛn tɛst ya we dɛn gɛt bɛlɛ ɔ afta dɛn bɔn di pikin.
Test fɔ no if yu gɛt kadyak rabdomyoma
bכku tεm dεn kin fכs no dis tכmכro we dεn de skan di כltra saund bifo dεn bכn we uman bεlε. dis tכmכro de bigin fכ si pan כltra saund bitwin 20 εn 30 wiks we di bεlε de. yu kin no am bak wit wan spεshal skan we dεn k כl fetal echocardiogram . dis na wan kayn כltra saund bak, bכt i de luk spεshal fכ eni prכblεm wit di at we di pikin de divεlכp na di bεlε.
di tεst dεm we dεn kin yuz fכ no εn evaluate di kadyak rabdomyoma afta dεn bכn di pikin inklud:
- Ilɛktrokardiogram (EKG/ECG) .
- Ekokardiogram (ɛko) .
- Magnɛtik Rɛsɔnans Imej (MRI) .
Yu pikin kin nid fɔ du tɛst ɔltɛm, lɛk EKG ɔ ɛko. Di dɔktɔ go wach di sist dɛn fɔ si if dɛn de shrink fɔ dɛnsɛf . Ɛni sist we nɔ de go fɔ dɛnsɛf go nid fɔ trit.
Bɔku tɛm dɛn kin mistek kɔl kadyak rabdomyoma fɔ tuberous sclerosis.I kin bi di fɔs sayn fɔ di sik. So, dɛn kin nid fɔ du ɔda tɛst fɔ si if di pikin gɛt sɔm sayn dɛn we gɛt tuberous sclerosis na ɔda pat dɛn na in bɔdi.
If dɛn no se yu pikin gɛt tuberous sclerosis, tɔk to yu dɔktɔ bɔt aw fɔ tɛst in jɛnɛtiks . Sɔntɛnde, mama ɛn papa dɛn kin gɛt dis sik pasmak ɛn dɛn nɔ kin ɛva no se dɛn gɛt am. So, yu dɔktɔ kin want fɔ si if yu ɔ yu patna gɛt di jin we de mek pɔsin gɛt di sik.
Wetin na di tritmɛnt dɛn?
Di gud nyus na dat bɔku tɛm di kadyak rabdomyomas kin smɔl ɛn dɔn fɔ dɛnsɛf , so dɛn nɔ nid ɛni tritmɛnt . bכku tεm, dεn tכmכro dεm ya dכn rich dεn maksimal saiz bay di tεm we dεn bכn di pikin. Afta dat, di tumbu dɛn kin smɔl fɔ dɛnsɛf , ɛn dɛn nɔ kin mek ɛni prɔblɛm.
Bɔt nɔto ɔltɛm dɛn tumbu ya kin ambɔg di at wok ɛn dɛn kin nid tritmɛnt. Sɔntɛnde dis kin apin we uman gɛt bɛlɛ. If na so i bi, di mama kin nid fɔ tek mɛrɛsin fɔ mek di tumbu smɔl.
Sɔntɛnde, prɔblɛm kin apin afta dɛn bɔn di pikin. If di sist ɔ di sist klasta nɔ go insɛf , ɔ if i gro big, i kin ambɔg di pikin in at wok. Dis kin mek yu at nɔ de wok fayn ɔ yu at nɔ de bit ɔltɛm (arrhythmia).
If na so i bi, yu pikin kin nid mɛrɛsin dɛn lɛk dɛn wan ya:
- Angiotensin-kכnvεrt εnzym (ACE) inhibito dεm
- Diuretics (dεn na mεdikeshכn dεm we de pul di wata we pasmak na di bכdi) .
- Anti-arrhythmic mɛrɛsin fɔ mɛn sik dɛn
Yu dɔktɔ go tɔk to yu bɔt aw fɔ trit yu ɛn ɛp yu fɔ pik di plan we go fayn fɔ yu pikin. I nɔ kin rili nid fɔ du ɔpreshɔn .
Wetin na de luk fɔ di wan dɛn we gɛt dis sik? (Autluk) .
Bɔrku pipul dɛm wae gɛt kadyak rabdomyoma nɔr nid tritmɛnt . Bɔt if dɛn gɛt ɔda tin dɛn lɛk tuberous sclerosis, i kin afɛkt dɛn wɛlbɔdi tumara bambay.
If yu pikin gɛt tuberous sclerosis, i go nid fɔ de chɛk am ɔltɛm na dɔktɔ ɛn tɛst am . Fɔ sɔm pipul dɛm, de sik nɔr kin tranga, ɛn nɔr kin notis. Fɔ ɔda pipul dɛn, i kin mek dɛn gɛt siriɔs prɔblɛm ɛn i kin rili afɛkt dɛn kwaliti fɔ liv. Yu dɔktɔ go tɔk to yu bɔt yu pikin in patikyula mɛrɛsin nid ɛn di prɔgnosis. Tugeda, una kin mek di bɛst plan fɔ kia fɔ una pikin.
Wetin a fɔ aks di dɔktɔ?
Tɔk to yu dɔktɔ bɔt aw yu pikin in kɔndishɔn ɛn aw i go si am. If dɛn no se yu gɛt kadyak rabdomyoma we yu gɛt bɛlɛ, yu nɔ go no usay fɔ bigin. Yu dɔktɔ go mɔs ɛksplen bɔku tin bifo yu ivin aks kwɛstyɔn. Bɔt i go fayn fɔ aks kwɛstyɔn dɛn lɛk dɛn wan ya fɔ gɛt mɔ infɔmeshɔn:
- Aw wi go ebul fɔ wach mi pikin in rabdomyoma?
- Yu tink se mi pikin go nid mɛrɛsin ɔ ɔpreshɔn?
- Mi pikin gɛt tuberous sclerosis?
- Aw tuberous sclerosis go afɛkt mi pikin?
- A fɔ gɛt jenɛtik tɛst fɔ si if a gɛt tuberous sclerosis?
- Yu kin kɔnɛkt mi wit sɔpɔt grup we de ɛp pipul dɛn we gɛt tuberous sclerosis?
Fɔ no se yu pikin gɛt wan sik kin mek yu fred pas fɔ gɛt am yusɛf. Bɔt if yu gɛt di rayt infɔmeshɔn ɛn tin dɛn we yu nid, yu kin ɛp yu pikin fɔ kɔntrol di sik ɛn fɔ wɛl . If yu pikin gɛt kadyak rabdomyoma, tɔk to yu dɔktɔ fɔ no mɔ. Yu dɔktɔ kin tɛl yu fɔ yuz wan we we dɛn kɔl "watchful waiting," we na fɔ kip yu yay pan di lumps ɛn si if dɛn go go fɔ dɛnsɛf . Bɔrku tɛm, na dis kayn we fɔ du tin na ɔl wetin dɛn nid. Bɔt if dɛn nid tritmɛnt, yu dɔktɔ go tɛl yu.
Sɔma (Mɛsej we dɛn kin tek go na os) .
Diya Mama ɛn Papa, Pan ɔl we di nem Cardiac Rhabdomyoma kin tan lɛk se yu de mek yu fred, mɛmba se bɔku tɛm na fayn tumbu we nɔ gɛt kansa . I kin apin mɔ pan bebi dɛn, ɛn bɔku tɛm i kin go fɔ insɛf we dɛn nɔ gɛt ɛni tritmɛnt .
Di tin we impɔtant pas ɔl na fɔ mek yu nɔ gɛt wanwɔd, fala di advays we dɔktɔ gi yu, ɛn tɔk to yu dɔktɔ ɔltɛm bɔt di sik we yu pikin gɛt. Yu fɔ no bɔt di kɔndishɔn dɛn we gɛt fɔ du wit am lɛk tuberous sclerosis, ɛn mek dɛn du di tɛst dɛn we nid ɛn fɔ fala-ɔp.
Wi de wish yu pikin fɔ wɛl kwik kwik wan!
` Kadyak Rhabdomyoma, Kadyak Rhabdomyoma, At Tכmכro, Infantil At Sik, Tuberous Sklerosis, Tuberous Sclerosis, Fetal At Disiz











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