Wan sik we nɔ kin bɔku we kin tɔn bɔdi to bon: Fibrodysplasia Ossificans Progressiva

As mama ɔ papa, yu de pe atɛnshɔn gud wan to ɛni smɔl chenj we de apin na yu pikin in bɔdi, nɔto so? Sɔntɛnde, di smɔl tin we wi notis kin bi sayn fɔ sɔntin we big pas am. Tide wi de tɔk bɔt wan pan dɛn kayn tin ya we nɔ kin apin so ɔltɛm, bɔt i impɔtant fɔ mek ɔlman no bɔt am. Dis sik na Fibrodysplasia Ossificans Progressiva, ɔ FOP fɔ shɔt.

Wetin na FOP rili?

Fɔ tɔk am simpul wan, dis sik na we di sɔft tisu dɛn na wi bɔdi lɛk di mɔsul dɛn, di ligamɛnt dɛn, ɛn di tɛndon dɛn kin tɔn smɔl smɔl to bon dɛn. Tink bɔt am, wi bɔdi in mɔsul dɛn de fɔ mek wi ebul fɔ chenj ɛn muv. Wi bon dεm de fכ gi wan strכng strכkchכ εn fכm. Di wok we dɛn tu sistɛm ya de du rili difrɛn.

Bɔt insay dis rare kɔndishɔn we dɛn kɔl FOP, dis ɔda sistɛm kin brok. di bכdi de bigin fכ tכn sכft tisu to bon insεf. I tan lɛk se nyu skel de gro insay wi, ausayd wi nɔmal skel.

As nyu bon dεm de fכm dis we, sכmtεm i kin at fכ muv difrεn pat dεm na di bכdi, sכmtεm i nכ kin izi fכ muv atɔl. Dis kin mek ivin di wok dɛn we pɔsin kin du ɛvride lɛk fɔ tɔk ɛn it sɔntin nɔ izi.

Dis sik kin bigin we dɛn smɔl. I kin bigin fɔs na di nɛk ɛn sholda ɛn smɔl smɔl i kin go na di ɔda pat na di bɔdi. As pipul dεn de ol, di bon dεm we de riples di sכft tisu de go כp. Bɔt di rit we dis kin go bifo kin difrɛn frɔm wan pɔsin to ɔda pɔsin.

Wetin mek dis de apin? Wetin na di rizin?

Di men tin we kin mek i apin na wan smɔl prɔblɛm we de na wan jin we de tɛl wi bɔdi aw fɔ gro bon ɛn mɔsul dɛn. Infakt, ivin we i de gro fayn, sɔm sɔft tisu dɛn kin tɔn to bon. Bɔt bikɔs ɔf dis jenɛtik dɛfɛkt, di bɔdi de mek mɔ bon pas aw i nid, we i nɔ nid am.

Wetin na di men sayn dɛm fɔ dis sik?

Tu men sayn de wae de ɛp fɔ no dis sik. I rili impɔtant fɔ no bɔt dɛn tin ya.

Di fɔs sayn ɛn we klia pas ɔl na in pɔsin kin si we dɛn bɔn am. di big fut dεm na di tu fut dεm sכt pas nכmal εn dεn de tכn insay, dat na, tכwεd di כda fut dεm. pan lεk 50% pan di pikin dεm, dεn kin si di sem difrεns na di big tכd dεm na di an dεm. Dis na rili impɔtant fɔs tin fɔ no bɔt dis sik.

di sɛkɔn men sayn na di sɔft tisu we wi bin dɔn tɔk bɔt we de tɔn to bon. Dis kin bigin wit we di tin dɛn we de mek yu fil pen, we tan lɛk tumor na yu bak, nɛk, ɛn sholda. Dɛn kin kɔl dɛn lumps ya bak "flare-ups." Dɛn lumps ya kin tɔn to bon as tɛm de go. Dɛn flawa ya kin apin bɔku bɔku tɛm ɔlsay na yu layf.

Di tin dɛn we kin mek pɔsin gɛt flawa

We di flare-up de, sɔm sayn dɛm lɛk pen, swel, joyn stiff, malaise, ɛn low-grade fiva kin apin rawnd di bumps.

Us kɔmplikɛshɔn kin apin bikɔs ɔf dis kɔndishɔn?

as di bכdi in sכft tisu dεm de tכn to bon dεm, i nכ de muv sכmtεm, we kin mek i gεt difrεn kכmplikεshכn dεm.

• I at fɔ blo: If di chɛst mɔsul dɛn tɔn to bon, di lɔng dɛn nɔ go ebul fɔ bɔku.
• I nɔ izi fɔ it: If dɛn nɔ de muv di jaw jɔyn, i kin at fɔ opin yu mɔt ɛn it. Dis kin mek i nɔ gɛt bɛtɛ tin fɔ it.
• Lɔs di bɔdi balans: I nɔ kin izi fɔ mek yu balans we yu de waka ɔ sidɔm.
• I nɔ izi fɔ tɔk
• Skɔliosis we de mek pɔsin gɛt sik
• Infεkshכn dεm plεnti tεm: Bikɔs yu nɔ de muv, di risk de fכ infεkshכn we gɛt fɔ du wit di nos, trot, ɛn lכng.
• Risk fɔ gɛt at atak: Sɔntɛnde, dis kin afɛkt di at wok bak.

Aw fɔ no di sik?

Bɔku tɛm, dɔktɔ kin sɔprayz dis sik we dɛn si dɛn tu men sayn ya we dɛn de du ɛgzam na dɛn bɔdi—di difrɛns na di big fut ɛn di lumps na di bak ɛn sholda.

Fɔ kɔnfirm se dis na FOP, dɛn kin du spɛshal blɔd tɛst (jɛnɛtik tɛst) fɔ no di jenɛtik dɛfɛkt we de mek di sik.

Yu tink se tritmɛnt de fɔ dis?

Bɔt i sɔri fɔ no se, no mɛrɛsin nɔ de yet fɔ dis sik, ɛn di tritmɛnt we dɛn kin gɛt nɔ bɔku.

Yu dɔktɔ kin gi yu sɔm mɛrɛsin dɛn lɛk kɔtikosterɔyd fɔ kɔntrol di pen ɛn swel we kin apin we pɔsin de flay.

Apat frɔm dat, fɔ mek di wok dɛn we yu de du ɛvride izi, yu kin gɛt tin dɛn we go ɛp yu lɛk spɛshal sus ɛn bres wit di ɛp we ɔkupeshɔn tɛrapist de gi.