Yu kin de wɔnda wetin mek a kin kɔntinyu fɔ gɛt strenj lumps ɔlsay na mi bɔdi, ɔ wetin mek sɔm sik dɛn jɔs nɔ go dɔn. Sɔntɛnde, di rizin fɔ dis kin tranga smɔl pas aw wi kin tink. Tide wi go tɔk bɔt wan rare bɔt rili impɔtant kɔndishɔn fɔ bi aware of. Dat na von Hippel-Lindau sik, ɔ wi kin kɔl am `(VHL)` fɔ shɔt.
Wetin na Vɔn Hipɛl-Lindau (VHL)? Lɛ wi ɔndastand am simpul wan.
Okay, naw yu go probabli de wanda wetin dis `(VHL)` bi. Fɔ tɔk am simpul wan, von Hippel-Lindau na wan sik we nɔ kin apin so ɔltɛm. i kin apin we `(jεnεtik mכtεshכn)` כ chenj de insay sכm pan di jin dεm na yu bכdi. dis kin mek yu gεt hכy risk fכ divεlכp `(malignant)` tכmכro dεm, εn bak `(benign)` tכmכro dεm εn sist dεm, na difrεn pat dεm na yu bכdi. Sɔmtɛm dɔktɔ dɛn kin kɔl dis sik `(von Hippel-Lindau syndrome`.
Risach dɔn sho se 97% pan di pipul dɛn we gɛt dis jɛnɛtik muteshɔn go gɛt dɛn tɔŋ ya ɛn ɔda tɔŋ dɛn we gɛt fɔ du wit VHL we dɛn ol 65. Bɔku tɛm, di men tritmɛnt fɔ di tɔŋ dɛn we gɛt fɔ du wit VHL na ɔpreshɔn fɔ pul di tɔŋ dɛn.
Us kansa kin gɛt fɔ du wit VHL sik?
If yu gɛt dis `(VHL)` kɔndishɔn, yu de pan risk fɔ gɛt wan ɔ mɔ pan dɛn kayn kansa ya:
- Klia sel rεnal kansa (ccRCC): Dis na di kayn kεnsar we de kכmכn pas ɔl na di kidni. Akɔdin to masta sabi pipul dɛm, bitwin 25% ɛn 60% pan pipul dɛm wae gɛt VHL kin gɛt dis kansa. Mɛmba se di kidni na wan pan di impɔtant pat dɛn na wi bɔdi, so kansa we de insay dɛn na sɔntin we wi fɔ rili wɔri bɔt.
- pankrεas nyuroεndokrin tכmכro dεm (pankrεas NET dεm): Dis na wan kayn tכmכro we nכ kin apin we de stat na di εndokrin sεl dεm na yu pankrias. Dɛn kin divɛlɔp bitwin 9% ɛn 17% pan pipul dɛm wae gɛt VHL.
- Fiochromocytoma: Dis na tכmכro we nכ de apin bכt we dεn kin trit we de divεlכp na di adrenal gland. Dɛn tɔŋ ya kin bigin as tɔŋ we nɔ gɛt kansa, bɔt leta dɛn kin bi kansa. Dɛn kin apin pan 10% to 20% pan pipul dɛm wae gɛt VHL.
- Brod ligament cystadenomas: Dis kכndyushכn de afekt uman dεm. I kin apin pan lɛk 10% pan uman dɛn we gɛt VHL. na tכmכro we de fכm nia di fallopian tכb dεm.
Wetin na di tɔŋ dɛm we nɔto kansa we kin kam wit VHL?
nכto kεnsar nכmכ, bכt di tכmכro dεm we nכ de kεnsar, dat na, tכmכro dεm we nכ de spre to כda pat dεm na di bכdi (mεtastasayz), kin divεlכp we VHL de. Di wan we impɔtant pas ɔl na di hemangioblastoma.Dis na tכmכro dεm we nכ de fכ kansa we de fכm na di bכdi vεsεl dεm na di bren, spεnal kכd, כ rεtina. Pan ɔl we dɛn nɔ kin skata, dɛn kin gro big ɛn afɛkt di tisu dɛn we de rawnd, ɛn dis kin mek dɛn gɛt siriɔs wɛlbɔdi prɔblɛm.
di kayn hemangioblastomas we yu kin si we gɛt fɔ du wit `(VHL)` na:
- Retina hemangioblastoma: Dis na wan kayn tכmכro we de divεlכp na di yay. I kin ivin mek pɔsin nɔ ebul fɔ si fayn igen. Risach sho se i de divεlכp pan 60% pan di pipul dεm we gεt (VHL).
- di bren stεm εn sεribεl εmanjioblastomas: Dis na tכmכro dεm na di bren. Dɛn kin afɛkt yu balans ɛn mek yu gɛt ɔda prɔblɛm dɛn. Dɛn kin afɛkt bitwin 13% ɛn 72% pan pipul dɛm wae gɛt VHL.
- di spεnal kכd hεmangioblastoma: Dis kayn εmangioblastoma de divεlכp bitwin 13% εn 50% pan di pipul dεm we gεt (VHL).
Apat frɔm dat, if yu gɛt VHL, yu de pan risk bak fɔ gɛt tumbu ɛn sist dɛn we nɔ gɛt kansa lɛk:
- Epididymal cystadenomas: Dis na tכmכro dεm we de afekt man dεm. dεn de divεlכp na di epididymis, we na wan sכm sכm tכb we lεk tכb we de stכr di sεl dεm, nia di tεstikul dεm. Dɛn kin apin bitwin 25% ɛn 60% pan di man dɛn we gɛt VHL.
- εndolimfatik sak tכmכro dεm (ELST): Dis na tכmכro dεm we rili rεs. If yu gɛt VHL, dɛn kin divɛlɔp na di insay yes. Dis kכndyushכn de afekt bitwin 10% εn 25% pan pipul dεm wae gεt VHL.
- Sist: Dis na sist we ful-ɔp wit wata. Pipul dεm we gεt VHL kin gεt dεn sist ya na di kidni εn pankrias.
Aw kɔmɔn tin na VHL sik?
Dis na rili wan sik we nɔ kin apin so ɔltɛm. I kin afɛkt lɛk wan pan ɛvri 36,000 pipul dɛn. Bɔrku pipul dɛm wae gɛt VHL kin bigin fɔ sho sɔm kayn sik wae dɛn dɔn pas 20 ia. Dis min se yu fɔ tek tɛm wit dis we yu yɔŋ.
Wetin na di sayn dɛm fɔ di sik we dɛn kɔl von Hippel-Lindau?
Bikɔs dis sik kin mek tumbu dɛn fɔm ɔlsay na yu bɔdi, di sayn dɛn kin difrɛn. i dipכnt pan usay di tכmכro dεm de εn di saiz fכ di tכmכro dεm. Yu kin gɛt sɔm kayn sik lɛk dis:
- Yu ed kin at ɔltɛm.
- Yu nɔ de yɛri ɔ yu de ring ɔltɛm na yu yes (tinnitus).
- Di ay blɔd prɛshɔn.
- Lɔs fɔ balans we yu de waka.
- Di mɔsul dɛn trɛnk we de dɔŋ ɔ i nɔ kin izi fɔ kɔdinɛt di muvmɛnt dɛn.
- Di tin dɛn we gɛt fɔ du wit vishɔn.
- Fɔ vɔmit.
Jɔs imajin, aw wi go wɔri if wi gɛt wan ɔ tu pan dɛn sik ya? So if yu gɛt bɔku pan dɛn sik ya wan tɛm, i rili impɔtant fɔ go to dɔktɔ.
Wetin kin mek pɔsin gɛt VHL sik?
Von Hippel-Lindau syndrome na wan sik we dɛn kin gɛt frɔm dɛn mama ɛn papa . I kin apin we yu gɛt wan abnɔmal kɔpi fɔ wan tumor suppressor jin we dɛn kɔl VHL frɔm wan pan yu mama ɛn papa.
fכ sכmtεm, dεn ``tכmכro sכpresכr jin dεm`` de stכp di sεl dεm fכ divayd tu kwik, we kin mek dεn gεt kεnsar. I tan lɛk di brek dɛn we de na motoka. Bɔt if dɛn chenj dɛn jin ya, i tan lɛk se dɛn pul di brek ɛn put di aksilarayt pan am. di sεl dεm de gro kwik kwik wan we dεn nכ de kכntro.
di sik de transmit insay wan כtosom dכminant inhεritεns patεn. Dis min se if wan pan yu mama ɛn papa gɛt di abnɔmal VHL jin, yu gɛt 50% chans fɔ gɛt am ɛn gɛt von Hippel-Lindau sik. Bɔt, risach dɔn sho se lɛk 10% pan di pipul dɛm wae gɛt VHL nɔr gɛt ɛni famili histri bɔt dis sik. Dis min se nyu jεnεtik mכtεshכn kin apin bak.
Aw dɛn kin no bɔt VHL sik?
Dɔktɔ dɛn kin sɔprayz se yu gɛt VHL if yu gɛt sayn dɛn fɔ wan sik we VHL dɔn mek, lɛk ɛmangioblastoma ɔ klia sɛl rεnal kansa. Bɔt di wangren we fɔ kɔnfirm dis na fɔ tɛst di jɛnɛtiks. If pɔsin na yu famili gɛt Von Hippel-Lindau sik, i impɔtant fɔ aks yu dɔktɔ bɔt aw fɔ tɛst yu jɛnɛtiks.
Wetin na di tritmɛnt fɔ VHL sik?
di tritmεnt opshכn dεm kin difrεn dipכnt pan di kayn VHL tכmכro כ sist. Yu dɔktɔ go ɛksplen di tritmɛnt dɛn we yu go ebul fɔ du we go fayn fɔ yu. Di tritmɛnt dɛn we dɛn kin yuz mɔ na:
- Ɔpreshɔn fɔ pul di tumbu.
- Kimotɛrapi.
- Redyushɔn tɛrapi.
- tεrapi we dεn tכk bכt inklud tin dεm lεk pεptida rεsεptכr rεdyכnyuklayd tεrapi (PPRT) εn tayrosin kinaz inhibito dεm (TKI).
- Imyunotɛrapi.
- Ɔmon tɛrapi.
Di tin we impɔtant pas ɔl na fɔ no di sik kwik kwik wan ɛn bigin di rayt tritmɛnt. Na da tɛm de nɔmɔ yu go ebul fɔ gɛt di bɛst rizɔlt.
Yu tink se dɛn kin mɛn VHL sik ɔltogɛda?
Bɔt i sɔri fɔ no se naw, no mɛrɛsin nɔ de fɔ di sik we dɛn kɔl von Hippel-Lindau. Di men gol fɔ tritmɛnt na fɔ fɛn ɛn pul di tumbu dɛn kwik kwik wan. Yu dɔktɔ kin tɛl yu fɔ du ɔpreshɔn fɔ pul di tumbu dɛn wit ɔda tritmɛnt dɛn.
If a gɛt VHL, wetin a fɔ ɛkspɛkt?
If yu gɛt dis sik, yu go nid fɔ du tɛst ɔltɛm fɔ chɛk fɔ si if yu gɛt sayn fɔ sɔm sik dɛn. If yu no di tumbu kwik kwik wan ɛn trit yu, dat kin ɛp fɔ ridyus di impak we di sik we dɛn kɔl von Hippel-Lindau gɛt pan yu layf. Na dat mek i impɔtant fɔ mek yu du di tɛst dɛn we yu dɔktɔ tɛl yu fɔ du.
Yu tink se dɛn kin ebul fɔ avɔyd di sik we dɛn kɔl VHL?
Nɔ, dɛn nɔ go ebul fɔ stɔp am. Dis na bikɔs di sik we dɛn kɔl von Hippel-Lindau kin kam bikɔs ɔf wan jenɛtik muteshɔn we kin pas frɔm wan mama ɔ papa to ɔda wan. If pɔsin na yu famili gɛt VHL, tɛst fɔ no if yu gɛt di muteshon bak.
Pan ɔl we yu nɔ go ebul fɔ avɔyd di sik we dɛn kɔl von Hippel-Lindau, i go fayn fɔ no yu risk ɛn ɔndastand aw `(VHL)` kin afɛkt yu. If yu no se yu de pan denja, dɔktɔ kin wach fɔ sayn dɛm fɔ `(VHL)`-rilayt tumor ɛn tek step fɔ pul dɛm kwik.
If yu gɛt di (VHL) jin ɛn yu de plan fɔ bɔn pikin, i fayn fɔ mit wit pɔsin we de advays yu bɔt di jɛnɛtiks fɔ tɔk bɔt di prɔblɛm we yu pikin gɛt fɔ gɛt di jin.
Ɛni spɛshal skrinin tɛst de fɔ di kɔndishɔn dɛn we gɛt fɔ du wit VHL?
No patikyula skrinin gaydlain nɔ de fɔ dis, lɛk aw i de fɔ ɔda kayn kansa (lɛk di kansa skrinin we di US Preventive Services Task Force dɔn rɛkɔmɛnd). Bɔt if di jenɛtik tɛst kɔnfirm se yu gɛt abnɔmal VHL jin, yu wɛlbɔdi tim kin tɛl yu fɔ du sɔm tɛst fɔ ɛp fɔ no prɔblɛm kwik kwik wan. Fɔ ɛgzampul, dɛn kin se yu fɔ du wan abdominal magnetic resonance imaging scan (MRI) ɛvri tu ia fɔ chɛk fɔ si if yu gɛt kansa we gɛt fɔ du wit VHL, lɛk klia sɛl rεnal kansa.
Aw a go tek kia ɔf misɛf? Wetin a go du?
Fɔ liv wit VHL min fɔ liv wit sɔm tin dɛn we nɔ shɔ. if yu inhεrit di jεnεtik mכtεshכn we de mek VHL, yu gεt 50% chans fכ divεlכp di kכndyushכn. If yu du dat, yu gɛt 97% chans fɔ gɛt sɔm kayn kansa ɛn ɔda siriɔs sik dɛn.
Bɔt nɔbɔdi nɔ go ebul fɔ tɔk klia wan aw `(VHL)` go afɛkt yu layf. Na sɔm tin dɛn we go ɛp yu fɔ sɔlv dɛn prɔblɛm dɛn ya:
- Gɛt sɔpɔt fɔ yu maynd wɛl bɔdi: Wan stɔdi dɔn sho se if yu no se yu gɛt VHL, i kin gɛt prɔblɛm wit yu maynd, lɛk fɔ wɔri ɛn fɔ panik atak. So, e fayn fɔ tɔk to pɔrsin wae de mɛn pipul dɛm wae gɛt dis maynia sik ɔr pɔrsin wae de gi yu advays.
- Protɛkt yu ɔl wɛl bɔdi: It balans it – bɔku mit we nɔ gɛt bɛtɛ bɔdi, ɔl gren, grɛn we gɛt lif, ɛn frut. Ɛksesaiz (we kin mek yu nɔ strɛs bak). Aks yu mɛdikal tim bɔt di vaysin dɛm we rayt fɔ yu.
Ustɛm a fɔ go to dɔktɔ?
If yu gɛt sɔm kayn sik lɛk dis, yu fɔ kɔl yu dɔktɔ wantɛm wantɛm:
- Chenj na di we aw yu de si ɔ yɛri.
- Yu ed kin at ɔltɛm.
- Nɔs ɔ vɔmit we dɛn nɔ tink se na ɔda sik mek i kam.
- Wan blɔd prɛshɔn we de go ɔp wantɛm wantɛm.
- If i nɔ izi fɔ yu fɔ waka wantɛm wantɛm, fɔ balans, ɔ fɔ mek yu muv fayn fayn wan.
Us kwɛstyɔn dɛn a fɔ aks mi dɔktɔ?
Imajin se dɛn dɔn tɛl yu se sɔmbɔdi na yu famili gɛt von Hippel-Lindau sik. If na so, na sɔm kwɛstyɔn dɛn ya yu kin aks yu dɔktɔ:
- Wetin mi jenɛtik tɛst rizɔlt se?
- Yu tink se di ɔda pipul dɛn na mi famili fɔ du dɛn jenɛtik tɛst?
- Aw ɔltɛm a fɔ gɛt tɛst fɔ no di fɔs sayn dɛm fɔ di kɔndishɔn dɛm we kin gɛt fɔ du wit `(VHL)`?
Fɔ dɔn, tin dɛn fɔ mɛmba (Take-Home Message) .
Von Hippel-Lindau disease (VHL) na wan sik wae nɔr kin bɔrku pan jɛnɛtiks. I kin afɛkt wan pan ɛvri 36,000 pipul dɛn. So, fɔ no se yu na wan pan dɛn 36,000 pipul dɛn de, kin mek yu sɔprayz, mɔ if nɔbɔdi na yu famili nɔ bin dɔn gɛt dis sik bifo.
If jenɛtik tɛst kɔnfirm se yu gɛt (VHL), gi yusɛf sɔm tɛm fɔ prosɛs di nyus. Dɔn, tek tɛm fɔ ɔndastand wetin yu diagnosis min. Fɔ ɛgzampul, yu kin gɛt kwɛstyɔn bɔt yu risk fɔ gɛt difrɛn kayn kansa ɛn tumbu, ɔ aw di sik we yu gɛt go afɛkt ɔda pipul dɛn na yu famili. Nɔ ɛva shem fɔ aks yu mɛdikal tim bɔt wetin fɔ ɛkspɛkt. Ɛn nɔr fɔgɛt fɔ aks fɔ ɛp fɔ kɔntrol de strɛs wae kin kam wit wae yu de liv wit (VHL). Nɔto yu wan de, ɛn bɔku pipul dɛn de we go ɛp yu fɔ du dis waka.
👩🏽 ⚕️ Ɔda kwɛstyɔn dɛn (FAQ dɛn)
💬 Yu tink se di wata we de kɔmɔt na di vagina na sik ɔltɛm?
Nɔ! uman in vagina na wan pat we de klin insɛf bay insɛf. I pafɛkt nɔmal fɔ gɛt smɔl klia ɔ milk wayt dischaj (we nɔ gɛt smel) ɛvride. Bɔt if i tɔn yɔlɔ, gɛt fish smel, ɛn mek i it na di vagina eria, na infekshɔn.
💬 Wetin mek di wata we de kɔmɔt na di wata kin tɔn yɔlɔ ɛn mek i gɛt inflamɛns?
‘curdled white’ dischaj wit siriכs it na sayn fכ yist infεkshכn (Yeast infection/Candida). fish, grey dischaj na sayn fכ baktri infεkshכn (Bacterial Vaginosis). If yu gɛt yɔlɔ/grin we tan lɛk pus kin bi sayn fɔ sik we pɔsin kin gɛt we i de du mami ɛn dadi biznɛs (STD) lɛk Trichomoniasis/Gonorrhea.
💬 I fayn fɔ yuz ‘Vaginal Wash’ fɔ avɔyd dis?
Nɔ ɛva! Nɔ duch wit vagina was, sop, ɔ sɛnt we yu bay na famasi! Dis go kil di gud baktri dɛm (Lactobacillus) we de insay ɛn mek di sik wɔs. Na wetin yu nid fɔ du na fɔ was ɛn was am wit klin wata ɛn wɛr kɔtɔn ɔndawea nɔmɔ. If di wata we de kɔmɔt na di wata we nɔ de kɔmɔt fayn, yu fɔ go to dɔktɔ to tritmɛnt.
` Von Hippel-Lindau, VHL, jenɛtik sik, kansa, tumbu, simptom, tritmɛnt
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