Yu gɛt smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl smɔl. Ɔ yu nɔ de yɛri bɛtɛ igen ɛn yu kin fil lɛk se yu ed de tɔn? Pan ɔl we wi kin tink se dɛn tin ya na nɔmal tin, sɔntɛnde biɛn dɛn tin ya kin gɛt wan sik we wi nɔ yɛri bɔt bɔku tin. Tide wi go tɔk bɔt wan pan dɛn kayn sik dɛn de. Dis sik na Nyurofibromatosis Tayp 2, ɔ di shɔt nem we wi ɔl no na NF2 . Pan ɔl we dis kɔmplikt smɔl, lɛ wi ɔndastand am simpul wan.
Fɔ tɔk am simpul wan, wetin na NF2?
NF2 na wan jεnεtik kכndishכn we de afekt wi nεv sεstem. We wan jin na wi bɔdi chenj, dat kin mek wi bɔdi mek bɔku bɔku sɛl dɛn. dis εksyכs sεl dεm de kכmכt εn fכm tכmכro.
di bεst pat na dat bכku pan dεn lumps ya na benign/non cancerous . Dis min se dɛn nɔ de skata to ɔda pat dɛn na di bɔdi. Bɔt dipen pan usay dɛn lumps ya fɔm, wi kin gɛt difrɛn prɔblɛm dɛn.
di ples dεm we dεn bכmp dεm ya kin fכm na:
- Nεv dεm we de ɔlsay na wi bכdi (pεrifεral nεv dεm).
- di mεmbran bitwin di bren εn di sכkul (meninges).
- Spine.
- Di nεv dεm we de kכnεkt di bren εn di insay yes, we de εp fכ yεri εn bεlε.
NF2 na wan kכndyushכn we de pan wan grup fכ sik dεm we dεn kכl `neurofibromatosis.` Dis grup fכ sik dεm de mεntal afekt wi skin εn nεv sεstem.
Aw dis sik kin bɔku?
Dis nɔto sik we bɔku pipul dɛn kin gɛt. Akɔdin to sɔm statystik, NF2 kin afɛkt lɛk wan pan ɛvri 33,000 pikin dɛn we dɛn bɔn ɔlsay na di wɔl. Na lɛk 3% pan ɔl di nyurofibromatosis pasɛnt dɛn we dɛn dɔn no na NF2 pasɛnt dɛn.
Wetin na di sayn dɛm fɔ NF2?
Di sayn dɛm fɔ NF2 kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Dɛn kin dipen pan usay di tumbu dɛn de na yu bɔdi ɛn aw dɛn big. Fɔ bɔku pipul dɛn, di fɔs sayn dɛn we dɛn kin gɛt na di tumbu dɛn we de na di nerv dɛn we de kɔntrol aw dɛn de yɛri.
Di fɔs sayn dɛm wae kin apun na wae pɔrsin de si ɔr de yɛri chenj. If yu gɛt ɛnitin lɛk dis, mek shɔ se yu go to dɔktɔ.
De tebul wae de dɔŋ ya kin ɛp yu fɔ ɔndastand dɛn sik ya klia wan.
| Tayp fɔ di simptom | Tɔk bɔt |
|---|---|
| di fכs simptom dεm fכ di כditory nerve tumor dεm | |
| Prɔblɛm dɛn fɔ balans | Fɔ fil diziz, nɔ ebul fɔ balans we yu de waka. |
| I nɔ kin izi fɔ yɛri | Di we aw wan ɔ ɔl tu di yes dɛn nɔ de yɛri smɔl smɔl. |
| Fɔ yɛri wan ring na yu yes (Tinnitus) . | Kɔntinyu fɔ yɛri sawnd we de ring insay di yes, ivin we sawnd nɔ de. |
| Simptom dɛm wae kin kam wit tumor dɛm na ɔda nerv dɛm | |
| Ed de at | Ed we kin at bɔku tɛm we ɔdinari mɛrɛsin dɛn we de mek pɔsin fil pen nɔ kin pul am. |
| Yu nɔ gɛt bɛtɛ trɛnk ɔ yu mɔsul dɛn wik | Yu nɔr de fil fayn ɔr yu de fil se yu nɔr gɛt layf na say dɛm lɛk yu an, yu fut, ɔr yu fes. |
| Facial paralaysis we pɔsin kin gɛt | Nɔ ebul fɔ kɔntrol wan say na di fes fayn fayn wan. |
| Skin kin chenj | di apinεns fכ nodul dεm כ plek dεm na di skin sεf. |
| Prɔblɛm dɛn we pɔsin kin gɛt we i de si | Blɔr vishɔn, katarakt. |
| Pen | Fɔ fil se yu de bɔn yu an ɛn yu fut. |
| Di sik dɛn we kin mek pɔsin sik | Di we aw tin kin apin we tan lɛk fit. |
Bɔrku tɛm, dis sik kin bigin fɔ sho bitwin di tɛm we i smɔl ɛn we i ol 30. Bɔt dis sik kin afɛkt pipul dɛn we ol ɛni ej. Big pipul dɛn kin gɛt prɔblɛm wit dɛn yɛri fɔs. Bɔt pikin dɛn kin gɛt tumbu na dɛn bren ɔ spɛshal kɔd. We di sik bigin we dɛn smɔl, dat min se di sik kin tranga pasmak.
Us kayn lumps de divεlכp na NF2?
sεvεra men tכp dεm de fכ nodul dεm we yu kin si na NF2. Lɛ wi tek wan simpul luk pan dɛn.
| Tayp fɔ di Tumɔr | Ples we dɛn kɔmɔt ɛn di tin dɛn we dɛn mek |
|---|---|
| Schwannomas bin de tɔk bɔt am | dis dεm de kכmכt frכm sεl dεm we dεn kכl Schwann sεl dεm. dεn kin fכnshכn mכst na di כditory nerve, we de kכnekt di bren to di yes (dεn kכl dεm bak vestibular schwannomas ). Dɛn kin divɛlɔp bak na di nerv dɛm we de ɛp wit tin dɛm lɛk fɔ muv yu yay, fɔ muv yu tɔŋ, ɛn fɔ swɛla. |
| Meningioma dɛn we de na di bɔdi | Dis na wan kayn tumbu we de fɔm na di bren. spεshal wan, dεn de fכm insay di mεmbran dεm (meninges) bitwin di bren εn di sכkul. |
| Gliomas we gɛt di sik | Dis na wan kayn tכmכro bak we de fכm na di bren. dis dεm de fכm frכm sεl dεm we dεn kכl glial sεl dεm. dεn kin si dεm bכku tεm arawnd di optik nεv dεm. |
| Ɛpɛndimoma dɛn | Dis na wan kayn glioma bak. I de divεlכp na di bren εn di spεnal kכd. i de kכmכt frכm sεl dεm we de prodyuz di wata we de insay di bren (sεribrospεnal fכluid - CSF). |
Wetin mek NF2 de divεlכp? Wetin na di kɔz?
di men rizin fכ dis na di jεnεtik chenj na di jin `NF2` na wi bכdi. dis jin de εp fכ mek wan protin we dεn kכl `merlin`. di men wok we dis protin de du na fכ stכp di fכmeshכn fכ di tכmכro dεm (tכmכro-sכpresכr).
so, we chenj de na di `NF2` jin, di `merlin` protin nכ de prodyuz fayn fayn wan. Dɔn sɔm sɛl dɛn na wi bɔdi kin bigin fɔ sheb ɛn bɔku we wi nɔ ebul fɔ kɔntrol. dis na aw di sεl dεm we pasmak de kכmכt εn fכm tכmכro.
Wi kin gεt dis jεnεtik vεryushכn insay tu we dεm:
1. Hεriditi: if wan pan di mama εn papa gεt dis jin mכtεshכn, i de lεk 50% chans fכ pikin go inhεrit am (`autosomal dominant` patεn).
2. Randomly: Sɔntɛnde, ivin if nɔbɔdi nɔ de na di famili we gɛt di sik, nyu jenɛtik mutation kin apin randomly di tɛm we dɛn gɛt bɛlɛ. Dis na aw bɔku pan di NF2 pasɛnt dɛn kin gɛt di sik.
Udat dɛn de pan denja? Wetin na di prɔblɛm dɛn we kin apin?
If pɔsin na yu famili, mɔ yu mama ɛn papa gɛt NF2, yusɛf de pan denja fɔ gɛt dis sik.
sεvεra komplikashכn dεm de we kin apin bikoz fכ NF2.
- I nɔ ebul fɔ yɛri igen.
- I nɔ de si fayn igen.
- Nɛv dɛn we dɔn pwɛl.
- Fluid we de bɔku na di bren.
sכm NF2 nodul dεm kin bi kεnsar, so fכ rεgulεr mεdikal chεk-ap rili imכtant.
Aw fɔ no bɔt dis sik?
Dɔktɔ go chɛk yu ɛn du difrɛn tɛst fɔ no if yu gɛt dis sik ɔ yu nɔ gɛt am. Fɔs, dɛn go du wan ɛgzam pan dɛn bɔdi. Dɛn go luk tin dɛm lɛk chenj na yu skin ɛn yu bɔdi in balans. Dɔn dɛn go aks bɔt yu sik ɛn yu famili mɛdikal histri.
Apat frɔm dat, dɛn kin du dɛn tɛst ya bak:
- MRI skan: Dis kin si klia wan if ɛni tumbu de na yu nervɔs sistɛm ɛn yu skin.
- Tɛst fɔ yɛri: Chɛk yu yɛri lɛvɛl.
- Ay ɛgzam: Chɛk fɔ si if yu gɛt katarakt ɔ ɔda prɔblɛm wit yu yay.
- jεnεtik tεst: Chεk fכ mכtεshכn na di `NF2` jin.
Wetin na di tritmɛnt dɛm fɔ NF2?
Infakt, no mɛrɛsin nɔ de fɔ NF2 yet. Bɔt di we aw dɛn de no bɔt dis sik ɛn aw dɛn de trit am dɔn rili bɛtɛ. Dɛn tritmɛnt ya kin ɛp fɔ kɔntrol de sik ɛn ɛp yu fɔ liv nɔrmal layf as yu ebul. Di tritmɛnt we dɛn kin gi kin difrɛn frɔm wan pɔsin to ɔda pɔsin. Yu dɔktɔ go disayd us tritmɛnt go fayn fɔ yu.
| Di we aw dɛn kin trit am | Wetin dɛn de du |
|---|---|
| Ɔpreshɔn | Dɛn kin du ɔpreshɔn fɔ pul di lumps ɔ katarakt. |
| Kimotɛrapi ɔ Radieshɔn tɛrapi | Dɛn kin yuz dɛn tritmɛnt ya fɔ ridyus di saiz fɔ di tumbu dɛn. Fɔ ɛgzampul, stiriɔtaktik rediotɛrapi na raytin tritmɛnt. |
| Di tin dɛn we pɔsin kin yuz fɔ yɛri | Dɛn kin yuz tin dɛn lɛk tin dɛn we dɛn kin yuz fɔ ɛp pɔsin fɔ yɛri, tin dɛn we dɛn kin yuz fɔ mek pɔsin yɛri, ɛn tin dɛn we dɛn kin yuz fɔ mek pɔsin yɛri fayn fɔ mek i nɔ yɛri fayn ɛn i kin mek i yɛri fayn. |
| Di tin dɛn we de ɛp pɔsin fɔ si | Dɛn kin gi divays dɛn lɛk glas fɔ di wan dɛn we nɔ de si fayn. |
| Di tin dɛn we de ɛp pɔsin fɔ muv | If i nɔ izi fɔ waka bikɔs di nerv dɛn dɔn pwɛl, dɛn kin gi yu tin dɛn fɔ muv. |
| Mɛrɛsin dɛn we dɛn kin yuz | Dɛn kin gi difrɛn mɛrɛsin fɔ kɔntrol di sayn dɛm lɛk pen. |
Sɔntɛnde, if yu lumps nɔ de mek yu gɛt ɛni big prɔblɛm, yu dɔktɔ kin disayd fɔ wach dɛn ɛn nɔ trit dɛn. Bɔt i impɔtant fɔ mek dɛn chɛk yu bɔdi, skan, ɛn tɛst yu fɔ yɛri ɛn si wan tɛm insay di ia fɔ no aw di sik de go bifo.
Di mɛdikal tim we de trit dis
Bikɔs NF2 na sik we kin afɛkt bɔku bɔku bɔdi sistɛm dɛn, na wan tim we gɛt dɔktɔ dɛn we gɛt difrɛn spɛshal wok dɛn kin trit am. Dis tim kin gɛt:
- Nyuro-ɔnkɔlɔjis: Dɔktɔ dɛn we spɛshal pan kansa ɛn tumbu dɛn na di nervɔs sistɛm.
- Nyurosɔjɔn: Sɔjɔn dɛn we spɛshal pan di nervɔs sistɛm.
- Di wan dɛn we de du ɔpreshɔn pan ENT: Na di wan dɛn we de du ɔpreshɔn pan di yes, nos, ɛn trot.
- Ɔdiɔlɔjis: Na spɛshal pipul dɛn we sabi aw fɔ yɛri.
- Jɛnɛtik kɔstɔma dɛn: Na spɛshal pipul dɛn we de advays bɔt jɛnɛtik sik dɛn.
Ɛni bad tin de we di tritmɛnt kin du?
Yɛs, lɛk ɛni tritmɛnt, dɛn tritmɛnt ya kin gɛt sayd ɛfɛkt. I kin difrɛn difrɛn wan bay di kayn tritmɛnt.
Sɔm prɔblɛm dɛn de we kin apin we dɛn du ɔpreshɔn fɔ pul di tumbu dɛn. biכs dεn tכmכro dεm ya de na say dεm we rili sεnsitiv lεk di bren εn di spεnal kכd, de risk dεm lεk fכ bכn, infεkshכn, εn di nεv dεm we de pwεl. Bɔt yu ɔspitul tim go du dɛn bɛst fɔ mek dɛn nɔ gɛt dɛn prɔblɛm dɛn ya.
Insay kemotɛrapi ɛn redyushɔn tɛrapi, .
- Banbɛlɛ
- Rɔnbɛlɛ
- We pɔsin taya
- Di ia we de lɔs
- Fil fɔ it
- Nɔs ɛn vɔmit
Sayd ɛfɛkt dɛm lɛk: Bifo yu bigin tritmɛnt, tɔk to yu dɔktɔ bɔt di sayd ɛfɛkt dɛm we yu kin gɛt.
Wetin yu kin se bɔt aw pɔrsin kin liv wit dis sik?
Aw NF2 de afɛkt pɔsin in layf de dipen pan bɔku tin dɛn. Di saiz fɔ di lɛsin dɛm, usay dɛn de, ɛn di ej we dɛn fɔs no di sik na sɔm pan di impɔtant tin dɛm. Sɔntɛnde, di lɛsin dɛn nɔ kin kɔz ɛni sayn. Ɔda tɛm, de sik kin rili bad.
Di bɛst tin na fɔ no di sik kwik kwik wan ɛn bigin fɔ trit am bifo prɔblɛm dɛn kam . Dɔn di we aw pipul dɛn de si tin kin bɛtɛ fa fawe. Dipen pan aw yu sik dɛn kin afɛkt yu, yu dɔktɔ go ebul fɔ gi yu mɔ kɔrɛkt prɔgnosis.
Yu tink se dɛn kin ebul fɔ stɔp NF2?
Nɔ, bikɔs NF2 na jɛnɛtik kɔndishɔn, dɛn nɔ kin ebul fɔ stɔp am. Bɔt if na famili histri bɔt dis sik ɛn yu de plan fɔ bigin famili, dɛn kin advays yu fɔ advays yu jɛnɛtiks bifo yu bɔn pikin.I rili impɔtant fɔ rifer to dɛn tin ya: So dat yu go ɔndastand mɔ bɔt di risk we yu pikin gɛt fɔ gɛt dis sik.
Mɛsej we dɛn kin kɛr go na os
- NF2 na jεnεtik kכndishכn we de mek tכmכro dεm na di nεv sεstem. Bɔku pan dɛn tumbu ya nɔto kansa.
- Sɔm kayn sik lɛk wae yu nɔr de yɛri fayn, yu nɔr de balans, yu nɔr de si fayn, yu skin kin gɛt rash, ɛn yu ed kin at.
- Pan ɔl we dɛn nɔ go ebul fɔ mɛn dis sik ɔltogɛda, bɔku fayn tritmɛnt dɛn de we go ebul fɔ kɔntrol di sayn dɛm ɛn mek in layf bɛtɛ.
- I rili impɔtant fɔ no di sik kwik kwik wan ɛn fɔ de chɛk-ap ɔltɛm ɔnda wan tim we gɛt spɛshal dɔktɔ dɛn.
- If yu famili dɔn gɛt dɛn sik ya, tink bɔt fɔ go to yu jenɛtik advays bifo yu bɔn pikin.
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