Yu smɔl pikin bigin fɔ tɔk ɔ waka smɔl leta pas ɔda pikin dɛn? I gɛt prɔblɛm fɔ de na wan ples? Sɔntɛnde, i kin wev in an dɛn strenj we, ɔ i nɔ kin ebul fɔ luk yu stret na yu yay? Na nɔmal tin fɔ mek yu as mama ɔ papa fred ɛn wɔri we yu si tin dɛn lɛk dis. Tide wi de tɔk bɔt wan jenɛtik kɔndishɔn we kin mek dɛn gɛt dɛn sik ya, bɔt dɛn nɔ kin tɔk bɔt am bɔku na wi sosayti. Dɛn kɔl dis Fragile X Syndrome. Lɛ wi tɔk bɔt am simpul wan, di we we ɔlman go ɔndastand.
Wetin na Fragile X Syndrome, fɔ tɔk am simpul wan?
Fɔ tɔk am simpul wan, dis na tin we pɔsin kin gɛt frɔm in jɛnɛtiks . Dat min se, i nɔto sɔntin we kin apin tru ɛnibɔdi in fɔlt ɔ neglijɛns. Na sɔntin we dɛn bɔn pikin wit. Dis sik kin afɛkt di we aw pikin de lan, aw i de biev, aw i de luk, ɛn sɔntɛnde i kin ivin afɛkt in wɛlbɔdi.
Di impɔtant tin fɔ mɛmba ya na dat bɔy pikin dɛn kin jɔs afɛkt dis sik bad bad wan pas gyal pikin dɛn. Wi go tɔk bɔt di rizin fɔ dis leta. Pikin dɛm wae gɛt dis sik kin gɛt disabled fɔ lan ɛn nɔr kin ebul fɔ divɛlɔp dɛn maynd fayn fayn wan. Bɔt wi kin ɛp dɛn pikin ya fɔ gɛt ɔl wetin dɛn ebul fɔ du bay we wi de trit dɛn di rayt we, spɛshal ɛdyukeshɔn, ɛn tritmɛnt .
Wetin na di sayn dɛm wae pikin kin sho pan dis kayn tin?
Pikin wae gɛt Fragile X kin sho difrɛn kayn sayn dɛm. Sɔm pikin dɛn kin sho dɛn kayn sik ya we nɔr kin tu, ɛn ɔda wan dɛn kin gɛt dis sik bad bad wan. Lɛ wi luk dis tebul fɔ ɛp wi fɔ ɔndastand dɛn sik ya klia wan.
| Tayp we gɛt kwaliti dɛn | Tin dɛn fɔ si |
|---|---|
| Prɔblɛm dɛn we gɛt fɔ du wit fɔ gro ɛn fɔ lan |
|
| Prɔblɛm dɛn we gɛt fɔ du wit aw pɔsin de biev ɛn aw i de fil | |
| Di kayn we aw pɔsin de luk na in bɔdi |
Di impɔtant tin na dat nɔto ɔl pikin go gɛt ɔl dɛn kwaliti ya. Ɛn jɔs bikɔs pikin gɛt wan ɔ tu pan dɛn kwaliti ya nɔ min se i gɛt Fragile X. Yu fɔ rili go to dɔktɔ fɔ mek dɛn no di sik kɔrɛkt wan.
Wetin na di kɔnekshɔn bitwin Fragile X, Ɔtizm ɛn ADHD?
Dis na pɔynt bak we rili impɔtant. Bɔku bɔku pikin dɛn we gɛt Fragile X kin gɛt tin dɛn bak lɛk ɔtizm ɔ ADHD (Attention Deficit Hyperactivity Disorder).
- Na lɛk 40% pan di pikin dɛm wae gɛt Fragile X kin gɛt ɔtizm bak .
- Ɛn lɛk 80% kin gɛt ADHD ɔ ADD (atɛnshɔn dɛfisit haypa aktiviti disɔda).
If pikin gɛt ɔl tu Fragile X ɛn ɔtizm, i kin gɛt prɔblɛm wit di sik, i kin gɛt prɔblɛm wit slip, ɛn i kin gɛt prɔblɛm wit di we aw i de biev.
Aw dis sik kin apin? Yu tink se na frɔm dɛn gret gret granpa dɛn?
Yɛs, dis kin apin bikɔs ɔf wan chenj na di jɛnɛreshɔn we dɛn kin gɛt frɔm wan jɛnɛreshɔn to di ɔda wan. Lɛ wi ɔndastand dis smɔl mɔ simpul wan.
wan jin de we dεn kכl `FMR1` na di X kromozom na wi bכdi. di men wok we dis jin de du na fכ mek wan spεshal protin (FMR protin) we de εp di nεv sεl dεm na wi bren fכ kכmכnik wit dεn wan dεm fayn fayn wan. Dis protin impɔtant fɔ mek di bren gro fayn fayn wan.
insay pikin we gεt Fragile X, mכtεshכn na di `FMR1` jin de mek sכm sכm כ nכ prodyushכn fכ dis imכtant protin. Dis kin ambɔg di bren divεlכpmεnt εn fכ wok.
Wetin mek bɔy pikin dɛn kin afɛkt mɔ?
Imajin, uman pikin gɛt tu X kromozom (XX). so ivin if difεkt de na di `FMR1` jin pan wan X kromozom, di כda hεlty X kromozom de kכmpεns di difεkt bכku tεm. So, uman pikin dɛn kin sho smɔl ɔ rili smɔl.
Bɔt man pikin gɛt wan X kromozom ɛn wan Y kromozom (XY). fכ dat, if difεkt de na di `FMR1` jin na da singl X kromozom de, nכ כda X kromozom de fכ kכmpεns fכ am. Na dat mek di sayn dɛm fɔ dis sik kin tranga pasmak pan man pikin dɛm.
If mama gɛt dis jin we nɔ fayn, wan pan in pikin dɛn (ilɛksɛf na man ɔ uman) gɛt 50% chans fɔ gɛt am. If papa gɛt dis jin, i kin jɔs pas am to in uman pikin dɛn.
Aw fɔ no dis sik?
Dis kכndyushכn kin כnli no wit sכri tru wan jεnεtik tεst. Dis min se dɛn fɔ du simpul blɔd tɛst. dis bכdi sεmpl dεn de yuz fכ chεk fכ mכtεshכn na di `FMR1` jin.
Ivin we uman bεlε, dεn kin du tεst fכ no if di pikin gεt dis kכndyushכn.
- Amniocentesis: Fɔ tek smɔl amniotic fluid frɔm di mama in bɛlɛ ɛn tɛst am.
- Chorionic Villus Sampling (CVS): dεn tek sכm sכm sεmpl sεl dεm frכm di plasεnta εn tεst dεm.
Bifo yu disayd bɔt dɛn tɛst ya, i rili impɔtant fɔ tɔk to yu dɔktɔ bɔt di gud ɛn bad tin dɛn .
Wetin wi go du fɔ ɛp di pikin?
Bikɔs dis na jɛnɛtik kɔndishɔn, nɔ "mɛjik bulɛt" nɔ de we go ebul fɔ mɛn am ɔltogɛda. Bɔt bɔku tin dɛn de we wi kin du fɔ kɔntrol di sik dɛn we pikin kin gɛt, ɛp am fɔ lan, ɛn mek di rod fɔ mek i liv fayn layf. Di tin we impɔtant pas ɔl na ya na fɔ intavyu kwik kwik wan (early intervention).
| Di we dɛn we go ɛp wi | Tɔk bɔt |
|---|---|
| Di tritmɛnt dɛn we dɛn kin gi |
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| Speshal ɛdyukeshɔn | Fɔ wok wit di skul fɔ mek wan spɛshal ɛdyukeshɔn plan we go mach di pikin in lanin abiliti. |
| Di mɛrɛsin dɛn we dɛn kin yuz | |
| Wan ples we de sɔpɔt pipul dɛn |
Aw di pikin dɛn ya tumara bambay go tan lɛk?
Dis na di big prɔblɛm fɔ mama ɛn papa dɛn. Fragile X nɔto wan sik we de mek pɔsin in layf de pan denja. De layf wae pɔrsin wae gɛt dis sik kin liv lɛk aw nɔrmal pɔrsin wae gɛt wɛl bɔdi kin liv.
If dɛn gɛt di rayt sɔpɔt ɛn trenin, bɔku pipul dɛn we gɛt dis sik kin liv fayn ɛn gladi at. Sɔm kin nid sɔm lɛvul fɔ sɔpɔt te dɛn big. Bɔt bɔku pan dɛn kin ebul fɔ go skul, rid buk, lan nyu tin, wok, ɛn du tin dɛn fɔ dɛnsɛf. Di tin we impɔtant pas ɔl na fɔ no wetin di pikin ebul fɔ du ɛn sɔpɔt am fɔ du dat.
Mɛsej we dɛn kin kɛr go na os
- Fragile X Syndrome nɔto pɔsin in fɔlt, na wan jenɛtik kɔndishɔn we pɔsin kin gɛt frɔm we dɛn bɔn am.
- Di sayn dɛm kin afɛkt bɔy pikin dɛm bad bad wan pas gyal pikin dɛm.
- If yu notis se yu pikin nɔ de gro fayn, i nɔ de tɔk fayn, i nɔ ebul fɔ lan, ɔ i gɛt prɔblɛm wit di we aw i de biev, tɔk to dɔktɔ bɔt dat.
- Pan ɔl we dɛn nɔ kin ebul fɔ mɛn dis sik ɔltogɛda, dɛn kin ebul fɔ kɔntrol di sik dɛn fayn fayn wan wit tritmɛnt ɛn mɛrɛsin.
- If yu no di sik kwik kwik wan ɛn gi di pikin di sɔpɔt we i nid, dat go ɛp am fɔ gɛt sakrifays tumara bambay.
- If yu gɛt ɛni dawt bɔt yu pikin, di bɛst tin fɔ du na fɔ go to yu dɔktɔ we de mɛn pikin dɛn ɔ famili dɔktɔ fɔ advays.
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