We yu dɔktɔ tɛl yu se yu pikin gɛt wan sik we dɛn kɔl `PIK3CA-Related Overgrowth Spectrum`, ɔ `(PROS)` fɔ shɔt tɛm, yu kin fil big shɔk ɛn fred. Ivin fɔ yɛri dis nem kin at, nɔto so? Bɔt nɔ wɔri. Nɔto yu wan de. Wan ol tim de we gɛt sɛns ɛn spɛshal dɔktɔ dɛn we go ɛp yu ɛn yu pikin we dɛn gɛt dis kayn kɔmpleks tin. Tide, lɛ wi tɔk bɔt udat de na dis tim ɛn aw dɛn go ɛp yu pikin.
Wetin rili na PROS? Wetin mek dis nid bɔku spɛshal dɔktɔ dɛn?
Fɔ tɔk am simpul wan, PROS na wan jenɛtik kɔndishɔn we de mek di sɛl dɛn na wi bɔdi gro we wi nɔ ebul fɔ kɔntrol ɛn fast pas aw i fɔ gro. i de kכz fכ wan mכtεshכn insay wan jin we dεn kכl PIK3CA. dis kin mek difrεn pat dεm na di bכdi, lεk skin, bon dεm, fεt tisu, bכdi vεsεl dεm כ כgan dεm lεk di bren, gro pas aw i nכmal. De sik kin difrɛn frɔm pɔrsin to ɔda pɔrsin. Sɔm pikin dɛn kin gɛt dɛn sik ya we dɛn bɔn dɛn. Fɔ ɔda pipul dɛn, dɛn kin jɔs apia we dɛn dɔn ol smɔl. Fɔ sɔm pikin dɛn, de sik kin wɔs as dɛn de ol, bɔt fɔ ɔda wan dɛn, i nɔ kin chenj bɛtɛ.
PROS nɔto wan sik, bɔt na wan kɔlekɛshɔn fɔ di sayn dɛm. Na dat mek i nɔ kin izi fɔ mek wan dɔktɔ trit am. Dɔktɔ dɛn we gɛt spɛshal no bɔt ɛni pat na di bɔdi we di sik afɛkt nid fɔ wok togɛda as wan tim.
Dɛn go tɔk to dɛnsɛf ɛn mek di bɛst tritmɛnt plan fɔ yu pikin. Dis we ya, dɛn kin luk di prɔblɛm frɔm difrɛn say dɛn, ɛn mek shɔ se yu pikin gɛt di bɛst tin fɔ du.
Spɛshal pipul dɛn we kin de na yu pikin in mɛdikal tim
dipכnt pan di bכdi pat dεm we yu pikin in `PROS` kכndishכn afekt, yu kin nid fכ si difrεn spεshal pipul dεm. Lɛ wi tek wan luk pan udat dɛn bi ɛn aw dɛn go ɛp na di tebul we de dɔŋ ya.
| Spɛshal dɔktɔ | Aw a go ɛp? |
|---|
| Nyurolɔjis | Dɛn rili impɔtant if impak de pan di pikin in bren, in spɛshal kɔd, ɔ in nervɔs sistɛm. Dɛn kin trit tin dɛm lɛk epilepsy, prɔblɛm wae de mɛk pɔrsin nɔr de fil fayn, ɛn wae pɔrsin nɔr kin ebul fɔ muv. |
| Wan dɔktɔ we de mɛn di at | If PROS afɛkt di pikin in blɔd vesel, i nid fɔ gɛt ɛp frɔm dɔktɔ we de mɛn di at. Dɛn kin ebul fɔ mɛn dɛn kayn tin ya wit mɛrɛsin, ɔpreshɔn, ɔr ɔda tritmɛnt. |
| Nefrɔlɔjis we de mɛn pipul dɛn | Kidni prɔblɛm na kɔmɔn tin na PROS. Dɛn go wok fɔ kɔntrol ay blɔd prɛshɔn, wach aw di kidni de wok, ɛn rifer fɔ dayalaysis ɔ fɔ transplant kidni if nid de. |
| Ɔtopɛdist | Dɛn kin trit tin dɛn lɛk skɔliosis, di leg dɛn we nɔ kin lɔng, ɛn di finga dɛn we nɔ kin lɔng if di pikin dɔn gro pasmak na dɛn skel sistɛm. |
| Wan dɔktɔ we de mɛn pipul dɛn we gɛt yay | di we aw yu de si fayn kin apin bikoz di tisu dεm we de gro pasmak na di bren כ rawnd di yay. Wan dɔktɔ we de mɛn yu yay go no bɔt dɛn tin ya ɛn gi dɛn di tritmɛnt we dɛn nid. |
| Spɛshal pɔsin we de wok fɔ di ia, nos ɛn trot (ENT Dɔkta) . | If di tisu dɛn we de gro pasmak na di fes ɔ di nɛk, ɔ if i nɔ izi fɔ swɛla, i impɔtant fɔ mek ENT dɔktɔ ɛp am. |
| Dɔktɔ we de mɛn pipul dɛn we gɛt skin | Insay sɔm PROS kɔndishɔn dɛm, lɛk CLOVES syndrome, di say dɛm na di skin kin gro pasmak. Dɛn tin ya kin bi yɔlɔ, rɛd, rɔf, ɔ smɔl smɔl. Na dɔktɔ we de mɛn dɛn skin kin mɛn dɛn prɔblɛm ya. |
| Spɛshal Sɔjɔn we de du di wok | Sɔntɛnde, ɔpreshɔn na di bɛst sɔlv. I kin bi nyurosɔjɔn we de trit di sik we de mek pɔsin sik, ɔ dɔktɔ we de pul di fat we de na di chɛst. |
| Ɔda Tɛrapist dɛn | If di bren afɛkt, di pikin kin gɛt prɔblɛm fɔ lan, fɔ biev, fɔ tɔk, ɔ fɔ muv. Cognitive therapists , speech therapists , ɛn physical therapists kin ɛp di pikin fɔ win dɛn prɔblɛm ya. |
| Spɛshal pipul dɛn we sabi bɔt jenɛtik ɛn kansa | Sɔntɛnde, PROS kin mek di risk fɔ gɛt kansa smɔl bikɔs di sɛl dɛn kin sheb kwik kwik wan. Di wan dɛn we sabi bɔt jɛnɛtiks kin ɛp di mɛdikal tim fɔ ɔndastand dis prɔblɛm. Dɛn kin pe atɛnshɔn to di pikin in wɛlbɔdi ɔltɛm. |
Yu tink se ɔl dɛn pipul ya nid fɔ mit ɔltɛm?
I dipen pan di kɔndishɔn we yu pikin gɛt. I impɔtant fɔ de nia dis tim we gɛt spɛshal pipul dɛn te yu pikin rich di tɛm we i fɔ bɔn.
We yu de chɛk ɔltɛm, dat kin ɛp fɔ no di prɔblɛm dɛn we kin apin we di tisu gro pasmak. Aks yu dɔktɔ klia wan bɔt us dɔktɔ yu fɔ go to, ɔmɔs tɛm, ɛn wetin na di gol fɔ dɛn visit dɛn de.
Aw yu kin fɛn dɛn spɛshal dɔktɔ ya?
Di bɛst we fɔ du dis na
fɔ tɔk to yu pikin in dɔktɔ ɔltɛm . I kin rifer yu to di rayt spɛshal pipul dɛn. Apat frɔm dat, dɛn kayn spɛshal pipul dɛn de de na di big ɔspitul dɛn na Sri Lanka, mɔ di ɔspitul dɛn fɔ pikin dɛn.
Mɛmba se, di kwik we yu kɔnɛkt wit dis tim we gɛt spɛshal pipul dɛn, na di mɔ i go bɛtɛ fɔ di pikin in fiuja.
Dis joyn kin tranga, bɔt if di rayt mɛdikal tim de sɔpɔt yu, yu kin gi yu pikin di bɛst tritmɛnt ɛn kia, ɛn ɛp am fɔ liv nɔmal layf as yu ebul.
Mɛsej we dɛn kin kɛr go na os
- `PROS` na komplex jεnεtik kכndishכn we de mek pat dεm na di bכdi gro pasmak. So nɔ fred, gɛt di rayt infɔmeshɔn.
- Na wan tim we gɛt spɛshal dɔktɔ dɛn de trit dis . Yu nɔ nid fɔ fes dis yu wan.
- Nɛv dɛn , at, .Di pikin kin nid di ɛp frɔm spɛshal pipul dɛn we sabi du difrɛn tin dɛn lɛk kidni , bon , ɛn skin sik dɛn .
- Tɔk to yu famili dɔktɔ ɛn aks fɔ riferal to di spɛshal dɔktɔ dɛn we nid am kwik kwik wan. Di kwik we dɛn bigin fɔ trit, na di mɔ di tin dɛn we go apin go fayn.
- Stay kɔntakt wit di mɛdikal tim ɔltɛm ɛn kip yu yay pan yu pikin in kɔndishɔn. Nɔ ɛva fred fɔ aks kwɛstyɔn if yu gɛt ɛni wan.
PROS sik, PIK3CA, pikin divεlכpmεnt, spεshal dכkta, pikin dεm, bכdi gro pasmak, jεnεtik sik dεm
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