A no se fɔ liv wit ankylosing spondylitis, ɔ AS fɔ shɔt, kin tranga sɔntɛnde. Ɛnibɔdi we dɔn sɔfa wit am no aw i kin tranga fɔ pas di de wit di pen we kin de na in bak ɛn jɔyn ɔltɛm ɛn we kin stif na mɔnin. Bɔt nɔto yu wangren de. Bɔrku we ɛn tin dɛm wae kin ɛp yu, gi yu trɛnk, ɛn gi yu nyu infɔmeshɔn bɔt dis joyn. Na dat wi de tɔk bɔt tide.
Wetin mek dis kayn sɔpɔt impɔtant to yu?
Fɔ tɔk am simpul wan, AS na wan sik we nɔ kin apin so ɔltɛm we kin afɛkt bɔku tin dɛn na yu layf. Bikɔs na sik we nɔ de mɛn, i impɔtant fɔ tek mɛrɛsin di rayt tɛm ɛn lan fɔ liv wit am. Dis na di say we sɔpɔt grup dɛn ɛn say dɛn we dɛn kin abop pan fɔ gɛt infɔmeshɔn kin ɛp.
Imajin aw i go kɔrej yu we yu ebul fɔ tɔk to pɔsin we ɔndastand di pen we yu de fil ɛn di prɔblɛm dɛn we yu de gɛt. Ɛn aw i go izi fɔ yu layf if yu lan bɔt di laytst tritmɛnt ɛn simpul we fɔ kɔntrol yu sik dɛn. Na dat mek i impɔtant fɔ no bɔt tin dɛn lɛk dis.
Usay a go fɛn sɔpɔt ɛn infɔmeshɔn?
Bɔku ples dɛn de we go ɛp yu ɛn sho yu di rayt say. Sɔm pan dɛn grup ya kin mit fes-to-fes. Ɔda wan dɛn kin jɔs de wok na di Intanɛt. Yu jɔs gɛt fɔ pik di we we go izi fɔ yu.
| Usay fɔ gɛt ɛp | Di sɔpɔt we yu de gɛt |
|---|---|
| Yu dɔktɔ. | De bɛst pɔrsin fɔ aks bɔt sɔpɔt grup ɔr tin dɛm wae yu kin trɔst wae fit fɔ yu kɔndishɔn. |
| Di ɔspitul ɔ klinik usay yu de gɛt tritmɛnt | Bɔku ɔspitul dɛn gɛt spɛshal sɔpɔt program ɔ awareness program fɔ di wan dɛn we sik. Chek dɛn fɔ si dɛn. |
| Kɔmyuniti Ɛlth Sɛnta dɛn | Yu kin gɛt infɔmeshɔn bak bɔt difrɛn wɛlbɔdi program dɛn tru sɛnta dɛn lɛk dɛn wan ya na yu eria. |
| Medikal fakulti dɛn na yunivasiti dɛn | Sɔntɛnde wi kin lan bɔt program dɛn we de pe atɛnshɔn pan di wan dɛn we sik tru risach yunivasiti dɛn. |
Bifo yu pik wan grup, du sɔm risach bɔt wetin di grup de pe atɛnshɔn pan, aw dɛn kin mit (ɔnlayn ɔ insay pɔsin), ɛn udat de lid di grup.
Tek tɛm wit dɛn tin ya we yu de go na di Intanɛt!
Naw, yu kin fɛn bɔku infɔmeshɔn na soshal midia lɛk Fɛsbuk ɛn Yutub. Yu kin rid ɛn wach di ɛkspiriɛns dɛm wae pipul dɛm wae de liv wit AS, de tin dɛm wae dɛn kin du. Dɛn tin ya kin mek wi gɛt kɔrej. Bɔt dis na ples usay yu nid fɔ rili tek tɛm .
Mɛmba se, nɔ tek ɛnitin we yu fɛn na di Intanɛt, mɔ di pɔsin in yon ɛkspiriɛns, as dɔktɔ in advays. I impɔtant fɔ tɔk to yu dɔktɔ bifo yu tray ɛnitin.
We yu de luk fɔ infɔmeshɔn na di Intanɛt, aks yusɛf dɛn kwɛstyɔn ya:
- Udat de rul dis wɛbsayt ɔ Fɛsbuk pej? Na wan mɛdikal ɔganayzeshɔn we dɛn no bɔt de rul am, ɔ na pɔsin we dɛn nɔ no?
- Dɛn de tray fɔ sɛl sɔntin? Sɔntɛnde dɛn kin tray fɔ sɛl dɛn prɔdak bay we dɛn kin tɔk tin lɛk "Dis mɛrɛsin go mek yu fil fayn." Nɔ mek dat ful yu.
- Yu tink se i tan lɛk se i tu gud fɔ bi tru? If yu si sɔntin lɛk "Di sikrit fɔ mɛn AS insay 7 dez," i go mɔs bi se na lay.
- Dis infɔmeshɔn na nyu tin? Yu tink se sɔntin de we sayɛnsman dɛn de yuz fɔ du sɔntin? Chek fɔ si if di infɔmeshɔn we dɛn de pablish na risach ɛn dɛn de ɔp to di tɛm.
Intanɛshɔnal ɔganayzeshɔn ɛn wɛbsayt dɛn we dɛn kin abop pan
Na smɔl AS ɔganayzeshɔn dɛn stil de we spɛshal fɔ Sri Lanka. Bɔt big big intanashɔnal ɔganayzeshɔn dɛn de we de du risach bɔt dis sik ɛn ɛp di wan dɛn we sik ɔlsay na di wɔl. Pan ɔl we dɛn wɛbsayt ya de insay Inglish, dɛn kin pul tin dɛn we rili valyu ɛn kɔrɛkt bɔt di sik, nyu tritmɛnt, ɛksesaiz, ɛn aw fɔ liv wit di sik. If yu sabi Inglish smɔl, dɛn tin ya go rili yusful.
- Spɔndylaytis Asɛmbli fɔ Amɛrika (SAA):Dis na wan pan di big ɔganayzeshɔn dɛn na Amɛrika we de du spɔndylitis, inklud AS. Dɛn wɛbsayt (spondylitis.org) gɛt bɔku bɔku kɔnfrɛns fɔ di wan dɛn we sik, sɔpɔt grup dɛn, ɛn di nyu tin dɛn we de apin.
- Atraytis Fɔdayshɔn: Dis na big ɔganayzeshɔn we de gi infɔmeshɔn bɔt ɔl kayn at at sik. Dɛn wɛbsayt (arthritis.org) gɛt wan pat we de tɔk bɔt AS.
- Atraytis Nashɔnal Risach Fɔdayshɔn: Dɛn kin gi mɔni fɔ du risach fɔ fɛn mɛrɛsin fɔ at at sik. Yu kin no bɔt di laytst risach na dɛn wɛbsayt (curearthritis.org).
- Nashɔnal Instityut fɔ Atraytis ɛn Mɔskuloskel ɛn Skin Diziz (NIAMS): Dis na wan gɔvmɛnt ɔganayzeshɔn na Amɛrika. Di infɔmeshɔn we dɛn kin pul na dɛn wɛbsayt (niams.nih.gov) na tin dɛn we pɔsin kin rili abop pan ɛn sayɛns dɔn pruv am.
Onlayn kɔmyuniti dɛn usay yu kin rid ɔda pipul dɛn ɛkspiriɛns
Soshal midia pletfɔm de alaw yu fɔ kɔnɛkt wit pipul dɛn ɔlsay na di wɔl we de liv wit AS jɔs lɛk yu. Di sɔpɔt we yu de gɛt kin rili ɛnkɔrej yu. Bɔt, lɛk aw a bin dɔn tɔk bifo tɛm, nɔ tray ɛnitin we yu nɔ tɔk to yu dɔktɔ.
| Stej | Tɔk bɔt |
|---|---|
| Fɛsbuk | If yu luk fɔ Ankylosing Spondylitis, yu go si bɔku grup dɛn. Sɔm na prayvet grup dɛn, ɛn yu fɔ aks fɔ jɔyn. Insay dɛn tin ya, ɔda pipul dɛn kin aks kwɛstyɔn ɛn sheb ɛkspiriɛns. |
| Reddit we dɛn kɔl Reddit | Dis na ɔda ples we pipul dɛn lɛk fɔ sheb infɔmeshɔn ɛn aydia. Bi mɛmba na di kɔmyuniti we dɛn kɔl `r/ankylosingspondylitis` usay yu kin aks kwɛstyɔn ɛn rid bɔt ɔda pipul dɛn ɛkspiriɛns. |
| Instagram / twita we de na di wɔl | Yu kin fɛn rilevɛns post dɛn we yu de yuz hashtag dɛn lɛk `#ankylosingspondylitis`, `#arthritis`, `#chronicpain`. Bɔt yu fɔ rili tek tɛm we di tin dɛn we de insay dɛn tin ya kɔrɛkt. |
Aw yu kin chɛk if yu kin abop pan yu akɔn na di Intanɛt?
- Lisin to yu gut: If sɔntin fil bad ɔ fek we yu luk di akɔn, sɔntɛm na so i bi.
- Luk fɔ Verified Accounts: Akɔn dɛn frɔm big, ɔganayzeshɔn dɛn we gɛt gud nem gɛt blu tik nia dɛn, we min se di akɔn na rial ɛn nɔto fek.
- Kwɛstyɔn di kwaliti fɔ di infɔmeshɔn: As wi bin dɔn tɔk, tink ɔltɛm bɔt udat de du dis, fɔ sɛl am, ɛn na sayɛns.
De joyn wit dis sik kin de yu wan ɛn tranga sɔm tɛm. Bɔt if yu gɛt di rayt infɔmeshɔn ɛn di rayt sɔpɔt, yu go ebul fɔ kɔntrol di sik fayn fayn wan ɛn liv gladi layf.
Mɛsej we dɛn kin kɛr go na os
- Nɔto yu wan de pan yu joyn fɔ liv wit Ankylosing Spondylitis (AS). Bɔku bɔku ɔda pipul dɛn, jɔs lɛk yu, de liv wit dis sik.
- Yu dɔktɔ we de trit yu na di bɛst tin fɔ no bɔt yu. Tɔk to am fɔs bɔt ɛnitin.
- Pan ɔl we intanɛt, mɔ soshal midia, na fayn ples fɔ gɛt infɔmeshɔn, nɔ biliv ɔl wetin yu rid. Nɔ tink se pɔsin in yon ɛkspiriɛns go apin to yu.
- Bifo yu tray fɔ du ɛni nyu ɛksesaiz, it, ɔ ɛni ɔda tin, mek shɔ se yu aks yu dɔktɔ if i fayn fɔ yu.
- Pan ɔl we di wɛbsayt dɛn fɔ intanashɔnal ɔganayzeshɔn dɛn de insay Inglish, di kɔrɛkt, sayɛns infɔmeshɔn we dɛn de gi go ɛp yu fɔ mek yu no mɔ.
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