Yu fil se yu luk ol pas yu ej? Pan ɔl we i nɔmal fɔ fil da kayn we de sɔm tɛm, fɔ ol bifo tɛm, ɔr di bɔdi kin ol kwik kwik wan, kin rili bi bikɔs ɔf wan sik we nɔ kin apin na di bɔdi. Wan pan dɛn kayn sik ya na Werner Syndrome. Lɛ wi tɔk bɔt dis smɔl mɔ tide, bikɔs i rili impɔtant fɔ no bɔt am.
Wetin na di sik we dɛn kɔl Werner Syndrome?
Fɔ tɔk am simpul wan, Werner Syndrome na wan sik we nɔ kin apin so ɔltɛm we kin mek yu bɔdi ol kwik kwik wan pas aw yu bin de tink. Sɔm pipul dɛn kin kɔl am ‘adult progeria’. Bɔrku tɛm, di sayn dɛm nɔr kin apia te yu hit puberty. Dat min se yu go bigin fɔ notis difrɛns we yu stɔp fɔ gro kwik kwik wan lɛk yu padi dɛn. Dɔn, we yu rich 20 ia, yu go bigin fɔ gɛt di sayn dɛm fɔ ol ej - ɛn, as tɛm de go, di sik dɛm wae kin kam wit di ej.
Bɔt dis nɔto jɔs bɔt fɔ grey ia ɛn fɔ sag skin. We pɔsin ol, nɔto jɔs fɔ chenj di we aw pɔsin de luk. Bɔrku pipul dɛm wae gɛt Werner Syndrome kin gɛt prɔblɛm wae kin mek dɛn layf de pan denja wae dɛn ol 40 ɛn 50 ia.
Wetin na dɛn sayn ya?
We yu gɛt Werner Syndrome, de sik kin kam fɔ no mɔr as yu de ol. Yu kin bigin fɔ notis sayn dɛm wae de sho se yu dɔn ol kwik pas ɔda pipul dɛm wae yu ej, wae yu dɔn pas 20 ia. Na sɔm pan dɛn:
Di chenj dɛn we de apin na di we aw pɔsin de luk
- Grey na di ia ɛn di ia we de lɔs: Dis nɔ kin jɔs inklud di ia na di ed, bɔt i kin inklud bak di aybrɔw ɛn aylash.
- Voys de bi ay-pitch ɔ hoarse.
- di sכbkutan adipos tisu dεm we de dכn: Dis kin mek i tan lεk se di skin de sag.
- Mɔsul dɛn we de atrofi.
- Di tut we kin rɔtin bifo tɛm.
- sכm εria dεm na di skin de dak (hyperpigmentation) כ sכm εria dεm we de layt (hypopigmentation).
- di skin de rεd bikɔs di blɔd vesel dεm dεn dilayt.
- Skin de smol ɔr at: Dis kin fiba sɔm kayn sik wae dɛn kɔl sklerodama.
- Wan pinched, distressed fes ɛksprɛshɔn.
Ɔda wɛl bɔdi prɔblɛm dɛn we kin kɔmɔt insay di bɔdi
Wit Werner Syndrome, yu nɔr kin jɔs luk ol. Yu bɔdi kin rili ol kwik pas aw yu rili ol. Dis min se yu kin gɛt ɔda wɛl bɔdi prɔblɛm bak kwik pas aw yu bin de tink. Dɛn tin ya na:
- Tayp 2 dayabitis: Infakt, lɛk 7 pan ɛvri 10 pipul dɛm wae gɛt Werner Syndrome kin gɛt tayp 2 dayabitis we dɛn ol 35 ia.
- haypogonadism (inability fכ fכnshכn na di ovaria כ tεstikul dεm).
- Ɔlsa dɛn na di skin.
- Osteoporosis (we di bon dɛn kin tan).
- Atɛrosklɛrosis we kin mek pɔsin gɛt at.
- Katarakt ɔ makyula dijɛnɛreshɔn.
- Chɛst pen (angina).
- Mayokardial infarkshɔn we pɔsin kin gɛt.
- At we nɔ de wok fayn `(at we nɔ de wok fayn)`.
Risk fɔ gɛt kansa
Pipul wae gɛt dis sik kin gɛt sɔm kayn kansa. Fɔ ɛgzampul:
- Tayrɔyd kansa.
- Melanoma (kansa na di skin).
- Osteosarcoma (bon kansa) we de mek pɔsin gɛt bɔdi.
- Sɔft tisu sarkoma.
Wetin kin mek pɔsin gɛt dis sik we dɛn kɔl Werner Syndrome?
Dis na wan sik we pɔsin kin gɛt frɔm in jɛnɛtiks . Dat min se na bikɔs ɔf di chenj dɛn we de apin na wi jin dɛn. Werner Syndrome kin apin pan pipul dɛm wae gɛt tu difrɛns na di WRN jin. Bɔku tɛm, wan pan dɛn tu jin ya we nɔ fayn kin kɔmɔt frɔm di mama ɛn di ɔda wan kin kɔmɔt frɔm di papa.
Aw yu kin fɛn dis? (Diagnosis) .
Yu dɔktɔ go luk fɔ sɔm tin dɛn fɔ no if yu gɛt Werner Syndrome. Dɛn kin ɔda dɛn tɛst ya bak:
- Jɛnɛtik tɛst: Chɛk fɔ chenj dɛn na di jin we de mek pɔsin gɛt Werner Syndrome.
- X-ray: Chɛk fɔ si if yu bon chenj ɔ yu gɛt tumbu.
Sɔntɛnde, dɔktɔ dɛn kin no se pɔsin gɛt Werner Syndrome we i ol 15 ia. Bɔt bɔrku tɛm, dɛn kin no di sik na di 30 ɔr 40 ia. Dis na bikɔs sɔm pan de patikyula sayn dɛm fɔ dis sik kin tek da tɛm de fɔ sho.
Wetin na di tritmɛnt dɛn?
Dɛn kin trit Werner Syndrome bay di sayn dɛm wae de sho. Dis min se wan tritmɛnt nɔ kin wok fɔ ɔlman. Bɔku spɛshal pipul dɛn kin wok togɛda fɔ kɔdinɛt yu tritmɛnt plan. Fɔ ɛgzampul:
- Ɛndokrinɔlɔjis (ɔmon spɛshal pipul dɛn).
- Ɔftalmɔlɔjis ( ay spɛshal pipul dɛn).
- Ɔtopɛdist dɛn (bɔn ɛn jɔyn spɛshal pipul dɛn).
Di tritmɛnt dɛm wae yu kin gɛt kin bi:
- Dayabitis mɛrɛsin: Kɔntrol di shuga we yu gɛt na yu blɔd.
- Glas ɔ kɔntakt lens: Kɔrɛkt prɔblɛm wit yu yay.
- Mɛrɛsin fɔ gɛt at sik:Ridyus di risk fɔ kɔmplikeshɔn bay we yu de kɔntrol di atɛrosklɛrosis.
- Ɔpreshɔn: If ɛni tumbu de we gɛt kansa, pul am.
Yu tink se dɛn kin ebul fɔ avɔyd di sik we dɛn kɔl Werner Syndrome?
Bikɔs dis na jɛnɛtik kɔndishɔn, i sɔri fɔ no se, dɛn nɔ kin ebul fɔ stɔp di sik we dɛn kɔl Werner Syndrome.
Bɔt if yu ɛn yu patna ɔl tu gɛt di jin fɔ dis sik, ɛn yu want fɔ bɔn pikin bak, yu kin tink bɔt wan we we dɛn kɔl prɛimplant jenɛtik tɛst (PGT). PGT na kכmbaynshכn fכ jεnεtik tεst wit in vitro fεtilayzεshכn (IVF). dis involv fכ tεst di εmbrayo dεm bifo dεn put dεm na di uterus fכ ridyus di chans fכ di pikin dεm fכ gεt dεn jεnεtik dεfεkt ya. Bɔt dɛn tin ya na tin dɛn we nɔ izi fɔ du, so na jɔs di advays we dɔktɔ gi dɛn fɔ disayd fɔ du sɔntin.
Wetin bak yu go lɛk fɔ aks yu dɔktɔ?
If yu gɛt Werner Syndrome, i impɔtant fɔ aks yu dɔktɔ ɔl di kwɛstyɔn dɛn we yu gɛt. Fɔ ɛgzampul, yu kin aks tin dɛn lɛk:
- I fayn fɔ mek a du wan jenɛtik tɛst fɔ di sik we dɛn kɔl Werner Syndrome?
- Wetin na de tritmɛnt opshɔn fɔ Werner Syndrome?
- Wetin a fɔ du fɔ mek a nɔ gɛt kansa?
- Us skrinin a fɔ gɛt fɔ mek a nɔ gɛt prɔblɛm wit di sik we dɛn kɔl Werner Syndrome?
- Wetin na di chans fɔ mek mi pikin dɛn gɛt Werner Syndrome frɔm mi?
- Wetin na di chans fɔ mek a gɛt ɔda pikin we gɛt Werner Syndrome?
Us ɔda sik dɛn we gɛt di sem kayn sayn?
Apat frɔm di sik we dɛn kɔl Werner Syndrome, sɔm ɔda tin dɛn de we kin mek pɔsin nɔ gɛt bɛtɛ ayt ɛn i kin ol bifo tɛm. Dɛn tin ya na:
- Di sik we dɛn kɔl De Barsy syndrome
- Di sik we dɛn kɔl Gottron syndrome
- Hutchinson-Gilford syndrome (dis na di kayn Progeria wae kin afɛkt yɔŋ pikin dɛm) .
- Mulvihill-Smith sindrom we gɛt di sik
- Di sik we dɛn kɔl Rothmund-Thomson
- Storm syndrome we gɛt di sik
Ɔl dɛn tin ya na tin dɛn we nɔ kin apin so ɔltɛm, so i rili impɔtant fɔ gɛt kɔrɛkt diagnosis.
Smɔl istri bɔt Werner Syndrome ɛn aw i kɔmɔn?
Wan dɔktɔ we nem Ɔto Wɔna bin kam fɔ no bɔt di sik we dɛn kɔl Werner Syndrome fɔ di fɔstɛm insay di ia 1900. Di tu sayn dɛn we i bin notis fɔs pan yɔŋ pasɛnt dɛn na katarakt ɛn shayn dak pat dɛn na dɛn skin.
Dis na tin we nɔ kin apin so ɔltɛm. Frɔm we dɛn bin pul di fɔs ripɔt bɔt dis sik insay 1904, na lɛk 800 pipul dɛn nɔmɔ dɛn dɔn ripɔt na di mɛdikal jɔnal dɛn.
Insay Amɛrika, masta sabi bukman dɛn se na lɛk wan pan ɛvri 200,000 pipul dɛn kin gɛt wan sik we dɛn kɔl Werner Syndrome. Ɔlsay na di wɔl, di wan dɛn we kin gɛt dis sik nɔ bɔku lɛk wan pan ɛvri milyɔn.
Bɔt i kin apin mɔ na Jepan ɛn na di Sadinia rijɔn na Itali. Na de, lɛk wan pan ɛvri 30,000 ɔ 50,000 pipul dɛn gɛt dis sik. Di rizin fɔ dis na bikɔs bɔku pipul dɛn na dɛn eria dɛn de dɔn gɛt wan chenj na dɛn jɛnɛtiks we bin dɔn apin bɔku bɔku jɛnɛreshɔn dɛn bifo.
Fɔ no se yu ɔr pɔrsin wae yu lɛk gɛt Werner Syndrome kin tranga. I kin mek yu at pwɛl bikɔs no mɛrɛsin nɔ de. Bɔt, tritmɛnt kin ridyus di risk fɔ gɛt prɔblɛm dɛn we kin mek pɔsin in layf de pan denja.
Fɔ dɔn, di mɛsej we dɛn kin kɛr go na os
Werner Syndrome na wan sik we rili tranga, bɔt mɛmba se nɔto yu wan de.
- Gɛt di rayt mɛrɛsin ɛn advays: Dis go ɛp yu fɔ kɔntrol yu sik dɛn ɛn mek yu liv bɛtɛ layf.
- Fɔ fala di we aw yu de liv yu layf: Slip fayn, it tin dɛn we gɛt fayn fayn tin dɛn fɔ it, yuz tin dɛn we de protɛkt yu frɔm di san we yu de go na do na di san, ɛn tray fɔ mek yu nɔ strɛs. Dɛn tin ya go ɛp yu fɔ gɛt wɛlbɔdi.
- Fɛn sɔpɔt: Aks yu mɛdikal tim bɔt sɔpɔt grup dɛn. Sɔntɛm yu nɔ go de fil bɔku prɛshɔn rayt naw, bɔt kip da infɔmeshɔn de nia yu. I go ɛp wi tumara bambay.
Fɔ liv wit wan sik wae nɔr kin bɔrku lɛk dis nɔr kin izi. Bɔt if yu no di rayt tin, sɔpɔt yu, ɛn gɛt gud abit, yu go gɛt di trɛnk fɔ waka na dis waka.
` Werner sεndrכm, jεnεtik sik dεm, prεmature age, adכlt progeria, WRN jin, hεlth prכblεm, kεnsar risk
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