Wetin na Ɛmanjiɔblastoma? Lɛ wi tɔk bɔt am!

Yu don eva yehri di wohd `Hemangioblastoma`? I kin tan lɛk se i kɔmplikt smɔl, bɔt na wan kayn smɔl tumbu we kin kam na wi bɔdi, mɔ na di bren, spɛshal kɔd, ɔ insay di yay. Nɔ wɔri, wi go tɔk bɔt am simpul wan, di we we yu go ɔndastand.

Na dis kansa?

Bɔku pipul dɛn kin fred wantɛm wantɛm we dɛn yɛri di wɔd ‘tumor’, dɛn kin tink se, "O, a nɔ no if dis na kansa." A gladi fɔ tɛl yu, dis `Hemangioblastoma` nɔto kansa. fכ mεdikal, dεn ya na benign כ "non-malignant" tכmכro dεm. Dat min se dεn nכ de spre to כda pat dεm na di bכdi lεk kεnsar.

Bɔt pan ɔl we dɛn tin ya nɔto kansa, dɛn kin mek sɔm smɔl smɔl prɔblɛm dɛn. Wan na dat, sɔm tɛm dɛn kin pas wan pan dɛn tumbu ya de na di bɔdi. Di ɔda rizin na bikɔs as dis tɔŋ de gro smɔl smɔl, i kin bigin fɔ prɛs di impɔtant tisu ɛn nɛf dɛn we de rawnd am. Na da tɛm de ɔl kayn sik kin bigin fɔ sho. I tan lɛk se yu gɛt big tin na smɔl rum ɛn yu nɔ gɛt bɛtɛ ples fɔ di ɔda pat dɛn.

Udat dɛn kin gɛt dis sik mɔ?

Naw yu kin de wɔnda, "Udat go mɔs gɛt dis?" fכ tru, wan kכndyushכn we dεn kכl `Hemangioblastoma` kin divεlכp pan enibodi, pan eni ej. Bɔt, akɔdin to wetin dɔktɔ dɛn dɔn si, dis sik kin apin mɔ pan yɔŋ pipul dɛn .

Apat frɔm dat, wan ɔda spɛshal kes de. Dat na di jεnεtik sik we dεn kכl `Von Hippel-Lindau (VHL) sik`. Dis na wan sik we nɔ kin apin so ɔltɛm, we pɔsin kin gɛt frɔm in mama ɛn papa. Pipul dεm we gεt `(VHL)` sik kin gεt `Hemangioblastoma` tכmכro pas כda pipul dεm. jכs tink, akɔdin to stεdi, lεk 60% pan di pipul dεm we gεt `(VHL)` sik kin divεlכp dεn tכmכro dεm ya insay di yay. כlso, dεn se lεk 80% gεt di posisibul fכ divεlכp dεn tכmכro dεm ya na di bren כ spεnal kכd. So, big kכnεkshכn de bitwin `(VHL)` sik εn `Hemangioblastoma`.

Aw ɛmangioblastoma kin afɛkt di bɔdi?

Naw lɛ wi si aw dis tumbu de afɛkt wi bɔdi. di ifekt we i de du na di say we di tכmכro de εn in saiz de sho mεntal.

patikyular if dis tכmכro de divεlכp na di bren כ spεnal kכd, i kin blכk di fכ fכm fכ `Sεribrospεnal fכluid (CSF)`, we implεnt fכ wi bren εn spεnal kכd. dis `(CSF)` na, simpul wan, klia, wata lεk likwid we de rawnd wi bren εn spεnal kכd, we de gi dεm kushכn εn it. if dis `(CSF)` fכ fכlכ de bכku bay wan tכmכro, di prεshכn insay di bren kin inkrεs, we kin mek i gεt simptom dεm lεk ed we de at bad bad wan. Dɔn bak, i kin dipen pan usay di tumbu de, di nɛv dɛn we de na di say kin kɔmprɛs, ɛn dis kin mek di nɛv dɛn wok.

Aw kɔmɔn tin dis?

fכ tru, `Hemangioblastoma` nכto wan kayn tכmכro we rili kכmכn. if wi tek di tכtal nכmba fכ di tכmכro dεm we de divεlכp na di bren, `Hemangioblastoma` de mek 0.5% pan dεm, we na rili lכw pasεnshכn, lεk wan pan tu כndrεd. if wi tek di kayn tכmכro dεm we de divεlכp na di spεnal kכd, i go bi lεk 2%. If wi luk di statystik na kɔntri lɛk Amɛrika, dɛn se na lɛk 24 pan 100,000 big pipul dɛn gɛt sɔm kayn tumbu na dɛn bren ɔ na dɛn nervɔs sistɛm. So `Hemangioblastoma` na wan rili smɔl pasɛnt pan dɛn. So, dis nɔto sik we de ambɔg ɔlman.

Wetin na di sayn dɛm we de sho se yu gɛt dis sik?

di simptom dεm fכ dis `Hemangioblastoma` tכmכro kin difrεn sכmtεm dipכnt pan usay i de divεlכp. Lɛ wi si aw dat kin wok.

If yu gɛt spɛshal kɔd ɛmanjiɔblastoma:

If dis tכmכro de divεlכp na yu spεnal kכd, di nεv kכd insay yu spayna, yu kin gεt simptom dεm lεk dis:

• Kɔnstipɛshɔn ɔ fecal incontinence.
• I nɔ izi fɔ pis (urinary retention) ɔ nɔ ebul fɔ kɔntrol di urinary (urinary incontinence).
• Wan filin wae de fil fɔ de swɛt ɔr de swɛt na yu an ɔr pat dɛm na yu bɔdi.
• Mɔsul dɛn we wik , sɔntɛnde i kin mek i nɔ izi fɔ waka.

If yu gɛt Ɛmangioblastoma na yu bren:

If tכmכro lεk dis de divεlכp insay di bren, dεn kin tek am as bren tכmכro. Dɔn yu kin si sayn dɛn lɛk:

• Prɔblɛm fɔ balans , lɛk pɔsin we dɔn chak, kin apin.
• Ed kin at ɔltɛm , sɔntɛnde i kin wɔs na mɔnin.
• Nɔs ɔ vɔmit , mɔ na mɔnin.

If yu gɛt ɛmangioblastoma na di retina:

If di tכmכro de divεlכp na di rεtina, di layt we de na di bak pat pan di yay we de rεkכd di imej dεm we wi de si, dεn kin tek am as ay tכmכro. Na sɔm tin dɛn we kin apin:

• Retina detachment , we kin mek yu nɔ de si fayn igen.
• Smɔl smɔl ɔ i nɔ de si fayn igen .
• Ay pen ɛn swel .

Wetin na di rizin dɛn?

bכku tεm, i at fכ fכn klia, spεsifi k kכz fכ di divεlכpmεnt fכ `Hemangioblastoma`. Dat min se dɛn kin apin we nɔ gɛt wan patikyula kɔz (sporadic). Bɔt as wi bin dɔn tɔk, dɛn dɔn si se lɛk wan pan ɛvri 4 pasɛnt dɛn gɛt wan jɛnɛtik kɔndishɔn we dɛn kɔl `Von Hippel-Lindau (VHL)` we de mek dis tɔŋ. dat min se pipul dεm we gεt `(VHL)` de pan hכy risk fכ gεt dis tכmכro.

Aw yu no dis? (Diagnosis) .

If yu gɛt wan ɔ mɔ pan di sayn dɛm we wi dɔn tɔk bɔt, we yu go to dɔktɔ, i go aks yu fɔs bɔt di sayn dɛm we yu gɛt. I go aks bak bɔt yu ɔda mɛrɛsin ɛn if ɛnibɔdi na yu famili dɔn gɛt di sem kayn sik (family history). Dɔn, dɛn kin du bɔku tɛst fɔ no if dɛn no di sik ɛn fɔ no usay di tumbu de ɛn di sayz we i gɛt.

• CT scan (Computed Tomography scan): Dis kin yuz sɔm X-ray ɛn spɛshal kɔmpyuta fɔ tek krɔs-sekshɔn pikchɔ dɛn fɔ difrɛn tisu dɛn we de insay di bɔdi.
• MRI (Magnetic Resonance Imaging): Dis de yuz strɔng magnɛtik fil ɛn redio wev fɔ mek rili klia, ditayli pikchɔ dɛn bɔt ɔgan ɛn sɔft tisu dɛn we de insay di bɔdi. dis na rili imכtant tεst fכ no di kכndyushכn dεm lεk εmangioblastoma.
• Angiografi: Dis na fɔ injɛkt spɛshal day insay wan blɔd vesel fɔ mek di tכmכro dεm lεk εmangioblastoma na di bכdi vεsul dεm de mכr fכ si pan εks-ray כ MRI/CT skan. Bikɔs dɛn tɔŋ ya de gro na di blɔd vesel dɛn (vaskul tumor), dis tɛst kin gi gud aidia bak bɔt di blɔd we dɛn de gi.

Wetin na di tritmɛnt?

Okay, naw lɛ wi si us tritmɛnt dɛn de fɔ `Hemangioblastoma.` Di tritmɛnt we dɛn kin du kin bi bay bɔku tin dɛn, lɛk di sayz fɔ di tumbu, usay i de, ɛn yu ɔl wɛlbɔdi.

• Surgical resection: Dis na di we aw dɔktɔ dɛn kin tɔk mɔ bɔt. Insay dis, di dɔktɔ ɔ nɔs kin kɔt di skin ɛn yuz ɔspitul inschrumɛnt fɔ pul di tumbu. di men gol ya na fכ pul bכku pan di tכmכro as posbul we i de sכmtεm di damej pan di hεlty tisu dεm we de rawnd, spεshal wan di nεv dεm.
• Radieshɔn tɛrapi: Sɔntɛnde, if ɔpreshɔn nɔ ebul fɔ pul di tumbu kpatakpata, ɔ if di tumbu dɔn kam bak, dɛn kin yuz redyushɔn tɛrapi. Dis involv fɔ yuz pawaful raytin bim dɛn we dɛn dɔn tɔk bɔt rili prɛsishɔn fɔ pwɛl di tɔŋ sɛl dɛn ɔ fɔ mek di tɔŋ smɔl. Speshal we dɛn de fɔ dis we dɛn kɔl stereotactic radiosurgery. Aw lɔng ɛn aw lɔng dɛn gi yu redyushɔn tɛrapi dipen pan tin dɛm lɛk usay di tumbu de ɛn yu past mɛdikal histri.
• Wach: Sɔntɛnde, if di tumbu rili smɔl, nɔ gɛt ɛni sayn, ɔ if di say we di tumbu de mek i tu risky fɔ pul am bay ɔpreshɔn, dɔktɔ dɛn kin se yu nɔ fɔ du natin fɔ naw, bɔt yu fɔ wach am wit MRI skan ɔltɛm ɛn fɔ fala am. Dis na fɔ si if di tumbu de big ɔ if yu gɛt nyu sayn dɛn. If yu gɛt bɔku bɔku tumbu ɛn dɛn de gro ɔltɛm ɛn sloslo, yu kin tink bɔt dis we fɔ du tin.
• Tritmɛnt wit drɔgs:Naw dɛn de du risach bɔt mɛrɛsin dɛn we go mek dɛn tumbu ya nɔ gro ɔ mek dɛn smɔl. εspεshali fכ dεn wan dεm we gεt `(VHL)` sik, wan dכg we dεn kכl `(Belzutifan)` de sho saksesful risכlt naw fכ `(VHL)` rilayt tכmכro dεm, inklud `Hemangioblastoma`. Bɔt dɛn tin ya stil na nyu tritmɛnt, dɛn nɔ fayn fɔ ɔlman, ɛn na dɔktɔ in advays nɔmɔ fɔ tek dɛn.

Yu tink se dɛn kin mɛn am kpatakpata?

Dis na impɔtant kwɛstyɔn fɔ bɔku pipul dɛn. Ɛvri pɔsin we gɛt `Hemangioblastoma` difrɛn, so i nɔ kin izi fɔ gi wan ansa fɔ ɔlman.

Imajin, if pɔsin gɛt wan `Hemangioblastoma` tumor nɔmɔ, ɛn dɛn kin pul am kɔmplit wan ɛn sef wan wit ɔpreshɔn, di chans fɔ mek i gro bak na di sem ples rili smɔl. Dat min se chans de fɔ mek i wɛl.

Bɔt sɔm pipul dɛn kin gɛt pas wan tumbu (espɛshali di wan dɛn we gɛt VHL). Ɔ, di tumbu kin de dip dip wan na di bren ɔ na say we pɔsin kin fil we i nɔ izi fɔ pul. Insay dɛn kayn tin ya, fɔ tɔk bɔt fɔ wɛl ɔltogɛda kin at smɔl. So, e fayn fɔ tɔk to yu mɛdikal tim bɔt wetin fɔ ɛkspɛkt bay yu sityueshɔn.

Ɔda tin dɛn de we kin mek pɔsin gɛt prɔblɛm?

Yes, as wi bin dɔn tɔk bɔku tɛm bifo, if yu gɛt di jenɛtik kɔndishɔn `Von Hippel-Lindau (VHL)` sik, yu risk fɔ gɛt `Hemangioblastoma` kin bɔku pasmak. So, if dɔktɔ no se yu gɛt `Hemangioblastoma`, mɔ if yu yɔŋ ɔ yu gɛt bɔku bɔku tumbu, dɛn kin tɛst bak fɔ `(VHL)` sik.

Wetin na di prɔgnosis fɔ mek pɔsin wɛl?

di prכgnosis fכ εmangioblastoma jεnarali gud, εspεshali if di mεdikal tim ebul fכ pul di tכmכro kכmplit wan. Dɔn bak, if di tumbu nɔ dɔn kɔz sɔm sayn dɛn fɔ lɔng tɛm, lɛk fɔ pwɛl di nerv fɔ ɔltɛm, di chans fɔ mek i wɛl.

Ivin afta dɛn dɔn pul di tumbu, yu go stil nid fɔ go to yu dɔktɔ fɔ mek dɛn chɛk yu ɔltɛm . Dɛn chɛk-ap ya kin gɛt tin dɛn lɛk MRI skan. If yu du dis, i go ɛp fɔ no ɛn trit ɛnitin we de kam bak (espɛshali pan pipul dɛn we gɛt VHL) kwik kwik wan. So, fɔ fala yu dɔktɔ in instrɔkshɔn dɛn di rayt we ɛn fɔ go na di klinik dɛn di rayt tɛm rili impɔtant fɔ yu wɛlbɔdi.

Us kwɛstyɔn dɛn yu fɔ aks di dɔktɔ?

If yu gɛt ɛmangioblastoma, ɔ yu tink se yu go gɛt wan, i go fayn fɔ aks yu dɔktɔ kwɛstyɔn dɛn lɛk dɛn wan ya:

• "Wetin na di tin we kin mek a gɛt mi sik dɛn?"
• "Wetin na di chans fɔ mek a gɛt ɔda ɔndalayn mɛdikal kɔndishɔn (fɔ ɛgzampul, VHL sik) we mek a gɛt `Hemangioblastoma`?"
• "Wetin na di tritmɛnt opshɔn dɛm fɔ mi `Hemangioblastoma`? Wetin na di gud ɛn bad tin dɛm fɔ ɛni tritmɛnt?"
• "Us sayd ɛfɛkt a kin ɛkspɛkt afta dɛn tritmɛnt ya?"
• "Wetin na di chans fכ mek wan `Hemangioblastoma` divεlכp bak afta dεn dכn pul di tכmכro?"
• "Aw often a fɔ kam fɔ chɛk-ap?"

I go rili ɛp yu fɔ ɔndastand yu sik klia wan bay we yu aks dɛn kwɛstyɔn ya. Nɔ fred fɔ tɔk to yu dɔktɔ bɔt ɔltin we de na yu maynd, ilɛksɛf i smɔl. Na da tɛm de nɔmɔ yu go ebul fɔ gɛt di bɛst tritmɛnt.

Mɛmba as sɔmari (Tek-Home Message) .

Okay, so mek wi somari wetin wi don tok abaut.

εmangioblastoma na tכmכro we nכ de kεnsar (benign) we de fכm frכm di bכdi vεsεl dεm. Dɛn kin de mɔ na yu bren, yu spɛnal kɔd, ɔ yu retina .

As dis tכmכro de gro, i kin push pan di tisu we de rawnd am εn mek nyurolכjik simptom dεm.

Bɔku tɛm, dɔktɔ dɛn go pul di tumbu wit ɔpreshɔn. If dɛn pul di tumbu kpatakpata, di chans fɔ mek i kam bak nɔ go bɔku . כltu, pipul dεm we gεt jεnεtik kכndishכn lεk `Von Hippel-Lindau (VHL)` kin gεt hכy risk fכ gεt dεn tכmכro dεm ya, i kin ivin bi mכltipכl tכmכro dεm, εn dεn kin kam bak.

So, if yu gɛt ɛni wan pan di sayn dɛn we wi dɔn tɔk bɔt na dis atikul, mɔ if i de kɔntinyu ɔ i de wɔs, i go fayn fɔ mek yu go to dɔktɔ kwik kwik wan fɔ advays yu. Mɛmba se, di mɔ we dɛn no di sik kwik kwik wan, na di mɔ i go bi se di tritmɛnt go wok fayn. Nɔ wɔri, wit di rayt mɛrɛsin ɛn gayd, dɛn kin ebul fɔ mɛn dɛn sik ya ɛn liv fayn fayn wan.

` hemangioblastoma, bren tכmכro, spεnal kכd tכmכro, ay tכmכro, Von Hippel-Lindau, benign tכmכro, bכdi vεsεl tכmכro