Bɔku tɛm yu kin gɛt blɔd na yu nos? Yu kin gɛt rɛd spat na yu skin? Dis kin bi HHT (Hɛritɛy Ɛmorajik Tɛlangiɛktasia)?

Bɔku tɛm yu kin gɛt blɔd na yu nos? Ɔ yu gɛt smɔl smɔl rɛd spat dɛn na yu skin, mɔ na yu fes, yu lip, ɛn yu finga dɛn? Sɔntɛm yu mama, papa, ɔ ɔda pɔsin na yu famili dɔn gɛt dɛn prɔblɛm ya. Wi nɔ go pe atɛnshɔn tumɔs to dɛn tin ya, ɛn se, "O, na jɔs wi jɛnɛreshɔn dat." Bɔt, sɔmtɛm, i kin bi se wan mɛrɛsin rizin de biɛn dis we wi fɔ no bɔt. Tide wi de tɔk bɔt dis kayn tin we nɔ kin apin so ɔltɛm bɔt we rili impɔtant fɔ mek wi no bɔt. Dat na HHT, ɔ Ɛreditary Ɛmorajik Telangiɛktasia .

Fɔ tɔk am simpul wan, wetin na HHT?

HHT na jεnεtik kכndishכn we de pas dכn frכm jεnereshכn to jεnereshכn. I kin afɛkt mɔ di we aw wi blɔd vesel ɔ blɔd vesel dɛn de fɔm. Tink bɔt di blɔd vesel sistɛm na wi bɔdi lɛk wan nɛtwɔk we gɛt rod dɛn. Arteri dɛn de, lɛk big big rod dɛn, ɛn vein dɛn de, lɛk big rod dɛn. Dɛn kɔl di smɔl smɔl sayd rod dɛn we de kɔnɛkt dɛn tu big rod dɛn ya kapilari.

wetin kin apin pan pכsin we gεt HHT na dat dεn dilik kכnεkshכn dεm we dεn kכl kapilari dεm nכ de fכm fayn fayn wan. Bifo dat, dairekt, iregכl, wik kכnεkshכn de bitwin di at dεm εn di vein dεm. Insay mɛrɛsin, wi kin kɔl dɛn misfɔm kɔnekshɔn ya Arteriovenous Malformations (AVMs) .

dis AVM dεm kin divεlכp na εni כgan na wi bכdi, fכ egzampl na di nos, lכng, intestכn, כ ivin di bren. wan rili sכmכl AVM we de divεlכp na di sεf fכ di skin dεn kכl am Telangiectasia . Dis na di smɔl smɔl rɛd spat dɛn we de apin insay yu skin lɛk di lip dɛn. Dɛn wik blɔd vesel ya kin bɔs izi wan. We dɛn bɔs ɛn blɔd, i kin ivin mek bad bad tin apin, i kin dipen usay i de.

Dis sik kin ambɔg lɛk wan pan ɛvri 5,000 pipul dɛn ɔlsay na di wɔl. Bɔt bikɔs dɛn nɔ kin no se bɔku pipul dɛn gɛt dis sik, dɛn biliv se sɔntɛm dɛn go gɛt mɔ sikman dɛn. I kin apin pan pipul dɛn we gɛt ɛni ej ɛn ɛnibɔdi we kɔmɔt na ɔda trayb. Dɛn kin kɔl am bak Osler-Weber-Rendu sindrom .

Wetin na di men sayn dɛm fɔ HHT sik?

Di sayn dɛm fɔ HHT kin difrɛn frɔm wan pɔrsin to ɔda pɔrsin. I dipכnt pan usay insay di bכdi di abnכmal bכdi vεsul dεm (AVM) we wi bin tכk bכt fכs de. Sɔm pipul dɛn nɔ kin gɛt ɛni sayn we dɛn kin notis. Bɔt ɔda pipul dɛn kin gɛt sayn dɛn we rili siriɔs.

Lɛ wi put dɛn kayn sik ya na di tebul we de dɔŋ ya.

Wetin mek HHT kin kam?

Dis na tin we pɔsin kin gɛt frɔm in jɛnɛtiks.Na sɔntin we kin mek i apin. Dat min se, i nɔto sik we pɔsin kin pas. Na sɔntin we mama ɛn papa gɛt frɔm pikin dɛn. HHT na sik wae de kam wit wan dominant jin (dominant disorder). Dat min se, if ɛni wan pan yu mama ɛn papa bin gɛt dis sik, yu gɛt 50% chans fɔ gɛt dis sik bak.

HHT de kכz fכ mכtεshכn insay tu jin dεm (di `ENG` jin εn di `ACVRL1` jin), εn sayɛnsman dεm stil de rεsכch dis.

If yu gɛt HHT, i rili impɔtant fɔ tɔk to yu dɔktɔ bɔt di pɔsibul we yu pikin dɛn go gɛt am.

Aw dɛn kin no se pɔsin gɛt HHT?

Dɔktɔ kin sɔprayz dis afta i yɛri bɔt yu sik ɛn yu famili histri. Pan ɔl we dɛn kin du tɛst fɔ no if pɔsin gɛt di sik, bɔku tɛm dɛn kin no di sik bay di sayn dɛn we i gɛt.

Yu dɔktɔ go sɔprayz se yu gɛt HHT if yu gɛt at le tri pan dɛn tin ya:

• Di blɔd we de kɔmɔt na yu nos bɔku tɛm.
• di prεsεns fכ mכltipכl telangiectasias na di εria dεm na di skin usay spat dεm kin apin (fes, lip, finga dεm).
• fכ gεt AVM כ Telangiectasia na wan כgan insay di bכdi (lεk di lכng, bren, liva).
• Fɔ gɛt tayt famili mɛmba (mama, papa, brɔda ɛn sista) wit HHT.

Test fɔ kɔnfirm di sik

Yu dɔktɔ kin tɛl yu fɔ du sɔm tɛst dɛn, lɛk:

• Ultrasound Scan: Dis kin ɛp fɔ si if AVM dɛn de na di liva.
• MRI (Magnetic Resonance Imaging) Scan: I rili yusful, mɔ fɔ chɛk fɔ AVM dɛn na di bren.
• CT (Computed Tomography) Scan: I kin gɛt klia pikchɔ dɛn bɔt di ɔgan dɛn we de insay di bɔdi.
• Bɔbul Tɛst (Echocardiogram): Dis na spɛshal tɛst. Dɛn kin yuz am fɔ no if AVM dɛn de na di lɔng dɛn.

Wetin na di tritmɛnt dɛm fɔ HHT?

Di fɔs tin fɔ mɛmba na dat, no mɛrɛsin nɔ de fɔ HHT. Bɔt bɔku fayn tritmɛnt dɛn de we go ɛp yu fɔ kɔntrol di sik dɛn, fɔ ridyus di risk fɔ gɛt siriɔs prɔblɛm dɛn, ɛn ɛp yu fɔ liv nɔmal layf.

We yu de trit yu sik dɛn we yu gɛt naw, yu dɔktɔ go chɛk bak fɔ ɛni AVM we ayd we nɔ gɛt di sik yet.

Na sɔm we dɛn fɔ trit am:

• Fɔ mek yu nos blɔd bɔku tɛm: Yuz ɔntmɛnt ɛn salin sprɛy fɔ mek yu nos wet.
• Fɔ Anemia: Gi am pils we de tek ayɔn in ples ɔ if nid de, gi am blɔd.
• fכ stכp bכdi: Laser tritmεnt (`Ablation`) de pwεl di sכm sכm bכdi we de bכn.
• Embolization: Dis involv fכ blok di bכdi we de lid to wan AVM we de pan risk fכ bכn כ bכs wit spεshal tin.
• Ɔpreshɔn ɔ redyushɔn tɛrapi: Dɛn kin yuz dɛn tin ya fɔ pul ɔ shrink sɔm AVM dɛn.
• Fɔ stɔp sɔm mɛrɛsin dɛn: Dɛn kin nid fɔ stɔp mɛrɛsin dɛn lɛk aspirin we de mek blɔd nɔ klɔt pan dɔktɔ advays.

Tin dɛm fɔ tink bɔt we yu de liv wit HHT

Pɔsin we gɛt HHT kin nid fɔ gɛt mɛdikal monitarin ɛn tritmɛnt fɔ ɔl in layf, bɔt if dɛn gɛt di rayt tritmɛnt, di wan dɛn we gɛt HHT kin gɛt nɔmal layf we dɛn kin liv.

Wetin dɛn kin du fɔ mek yu nɔ gɛt blɔd na yu nos?

• Tɔk to yu dɔktɔ ɛn avɔyd mɛrɛsin dɛn we de mek yu blɔd bɔku (e.g. aspirin, NSAID).
• Kip yu nos wet ɔltɛm. Yuz humidifier na os, yuz saline nasal spray, ɛn fɔ put ɔntmɛnt dɛn we yu dɔktɔ tɛl yu fɔ du, rili impɔtant.
• Kip wan dayari fɔ si if sɔm it ɔ tin dɛn we yu de du kin mek yu nos blɔd bɔku.

If dɛn dɔn no se yu gɛt HHT, i rili impɔtant fɔ advays di ɔda pipul dɛn na yu famili fɔ mek dɛn du tɛst bak, bikɔs di mɔ we dɛn no di sik kwik kwik wan, na di mɔ dɛn go ebul fɔ avɔyd di siriɔs prɔblɛm dɛn.