Kodi mafupa anu nthawi zambiri amamasuka? Kodi khungu lanu limasweka mosavuta? Kodi ndi Ehlers-Danlos Syndrome?

Kodi nthawi zina mumamva ngati mafupa anu m'manja ndi miyendo yanu akuyenda mosavuta, ngati kuti amasuka? Kapena mumavulala kapena kusandulika buluu mosavuta ngakhale pang'ono? Mwina mukuganiza kuti, "O, ndiyenera kuti ndine wopusa pang'ono." Koma si zokhazo. Zitha kukhala chifukwa cha matenda otchedwa Ehlers-Danlos Syndrome (EDS) , omwe si ofala kwambiri, koma ndi ofunikira kudziwa. Tiyeni tikambirane za izi mwatsatanetsatane lero.

Kodi Ehlers-Danlos Syndrome (EDS) ndi chiyani?

Mwachidule, matenda a Ehlers-Danlos ndi matenda omwe amakhudza minofu yolumikizana m'thupi lathu. Tsopano mwina mukudabwa kuti minofu yolumikizana ndi chiyani. Tangoganizani kuti matupi athu ali ngati nyumba, ndipo minofu yolumikizana ili ngati simenti ndi matope omwe amalumikiza zinthu pamodzi, kuzipatsa mphamvu, monga makoma ndi denga. Ali paliponse m'thupi lathu - amathandiza kulumikiza ziwalo zathu pamodzi, ndipo amathandiza kulumikiza ziwalo zathu pamodzi.

Minofu yolumikizana iyi imapangidwa ndi mitundu iwiri ikuluikulu ya mapuloteni: kolajeni ndi elastin . Mu EDS, matupi athu sangathe kupanga puloteni iyi yotchedwa kolajeni moyenera. Chomwe chimachitika ndi chakuti munthu amene ali ndi EDS ali ndi kolajeni yofooka. Izi zikutanthauza kuti minofu yawo yolumikizana siili yolimba kapena yolimba monga momwe iyenera kukhalira.

Matendawa angakhudze minofu iliyonse yolumikizana m'thupi lanu. Mwachitsanzo:

• Za kagayidwe kake ka mafupa
• Ku mafupa
• Ku magazi
• Ku minofu yamafuta

Kutengera komwe EDS imakhudzira minofu yanu yolumikizana, mutha kuwona zizindikiro monga:

• Pakhungu lanu
• M'malo olumikizirana mafupa
• Mu minofu
• M'mitsempha yamagazi

Chofunika kwambiri ndichakuti matenda a Ehlers-Danlos ndi matenda obadwa nawo . Izi zikutanthauza kuti amatha kufalikira m'mibadwo yambiri. Ngati wina m'banja mwanu - kutanthauza munthu wapafupi nanu, monga amayi anu, abambo anu, abale anu, agogo anu - ali ndi vutoli, ndikofunikira kwambiri kuti mukaonane ndi dokotala ndikuyesedwa.

Kodi pali mitundu ina ya matenda a Ehlers-Danlos?

Inde, madokotala amagawa matenda a Ehlers-Danlos m'magulu akuluakulu pafupifupi 13, kutengera momwe matendawa amakhudzira thupi komanso zizindikiro zomwe zimayambitsa.

Mitundu yofala kwambiri nthawi zambiri imayambitsa mafupa ndi khungu losasunthika kapena losakhazikika lomwe ndi lofewa komanso losavuta kuvulala. Komabe, pali mitundu ina yosowa yomwe ingayambitse mavuto omwe angawononge moyo. Makamaka , matenda a vascular Ehlers-Danlos - mtundu wa EDS womwe umakhudza mitsempha yamagazi - ukhoza kukhala woopsa pang'ono.

Dokotala wanu adzakufotokozerani mtundu wa EDS yomwe muli nayo komanso chithandizo chomwe mukufunikira.

Kodi vutoli ndi lofala bwanji?

Malinga ndi akatswiri, pafupifupi munthu m'modzi pa anthu 5,000 aliwonse akhoza kukhala ndi Ehlers-Danlos syndrome. Izi zikutanthauza kuti ku Sri Lanka kuli anthu ena omwe ali ndi vutoli, koma mwina sakudziwa za vutoli.

Kodi zizindikiro za matenda a Ehlers-Danlos ndi ziti?

Ngakhale kuti mtundu uliwonse wa EDS uli ndi zizindikiro zake zapadera, pali zizindikiro zingapo zodziwika bwino zomwe zimawoneka kawirikawiri. Tiyeni tiwone zomwe zili:

• Malungo olumikizana ndi thupi: Ichi ndi chizindikiro chofala mwa anthu ambiri. Malungo anu amatha kuoneka omasuka komanso osakhazikika. Anthu ena amatha kupindika ndi kupotoza zala zawo, zigongono, ndi mawondo m'njira zachilendo kuposa ena. Taganizirani izi, mwina mwawonapo anthu akupindika matupi awo monga momwe amachitira mu circus, ndipo anthu ena akhoza kukhala ndi luso limeneli chifukwa cha EDS. Koma izi sizinthu zabwino nthawi zonse, chifukwa malungo amatha kusweka mosavuta.
• Khungu ndi lofewa kwambiri, lopyapyala, ndipo limatambasuka kwambiri kuposa masiku onse: Khungu limatha kutambasuka ngati lamba wa rabara. Khungu la anthu ena limamveka losalala kwambiri likakhudza, ngati velvet. Ndipo nthawi zina khungu limatha kukhala lopyapyala kwambiri.
• Kutupa mosavuta, kumasintha mtundu wa buluu pafupipafupi: Ngati mukumva mabala akuluakulu ngakhale mutatupa pang'ono, chimenechonso ndi chizindikiro cha izi. Anthu ena sangamvetse chifukwa chake izi zimachitika.
• Mabala amatenga nthawi yayitali kwambiri kuti achire, ndipo mabala amaoneka mosiyanasiyana: Ngakhale mabala ang'onoang'ono amatenga nthawi yayitali kuti achire. Nthawi zina mabalawo amaoneka opyapyala kwambiri, ngati mabala a pepala la ndudu.
• Kupweteka kwa mafupa ndi minofu: Ili ndi vuto lomwe anthu ambiri ali nalo. Amamva kupweteka komanso kutopa nthawi zonse.
• Kutopa: Kumva kutopa nthawi zonse, ngakhale utagona tulo tochuluka bwanji.
• Kuvuta kuganizira kwambiri: Kuvuta kuganizira kwambiri ntchito inayake, ngati kuti ubongo uli ndi chifunga.

Ngati muli ndi chimodzi kapena zingapo mwa zizindikirozi, ndi bwino kufunafuna upangiri wa dokotala.

Kodi n’chiyani chimayambitsa matenda a Ehlers-Danlos?

Chifukwa chachikulu cha izi ndi kusintha kwa majini . Mwachidule, maselo athu akamagawikana ndipo maselo atsopano amapangidwa, chidziwitso cha "DNA" yathu chimakopedwa. Ngati pali kusintha pang'ono, cholakwika, kapena kuwonongeka mu "DNA" panthawi yokopera iyi, chomwe chimatchedwa kusintha kwa majini. Monga momwe chilembo chaching'ono mu njira yophikira chimasunthidwira, kukoma ndi mawonekedwe a chakudya zimasintha.

Mu EDS, kusintha kwa majini kumeneku kumalepheretsa thupi kupanga puloteni yotchedwa collagen . Collagen ndiye chinthu chachikulu chomwe chimapatsa mphamvu khungu lathu, mafupa, ndi mitsempha yamagazi. Ngati sichipangidwa bwino, mavuto onse omwe atchulidwa pamwambapa amachitika.

Akatswiri apeza kusintha kwa majini kopitilira 20 komwe kungayambitse EDS. Kusintha kwa majini komwe muli nako kumatsimikiza ziwalo za thupi lanu zomwe zakhudzidwa. Komabe, nthawi zina madokotala sangathe kudziwa bwino lomwe kusintha kwa majini komwe kumayambitsa EDS ya munthu.

Ndani ali pachiwopsezo chachikulu chotenga izi?

Mitundu ina ya EDS imabadwa nayo . Izi zikutanthauza kuti ngati makolo ali ndi vutoli, kusintha kwa majini kumatha kuperekedwa kwa ana awo. Komabe, mitundu ina ndi ya thupi - zomwe zikutanthauza kuti munthu akhoza kukhala nalo popanda wina aliyense m'banjamo kukhala nalo, ndipo siliperekedwa kuchokera ku mibadwomibadwo.

Ngati kholo lanu limodzi kapena onse awiri ali ndi EDS, muli pachiwopsezo chotenga matendawa. Komanso, ngati muli ndi EDS, ana anu amatha kupatsirana kusintha kwa majini komwe kumayambitsa matendawa.

Kuti mudziwe zambiri za izi, mutha kupeza upangiri wa majini . Alangizi a majini angakuuzeni za chiopsezo chotengera matenda awa kuchokera kwa inu, kapena kuwapatsira ana anu.

Kodi mavuto a Ehlers-Danlos syndrome ndi otani?

Vuto lofala kwambiri lomwe anthu omwe ali ndi EDS angakumane nalo ndi kusokonekera kwa mafupa , komwe kumachitika pamene mafupa omwe ali m'malo olumikizirana mafupa amatuluka m'malo awo abwinobwino.

Chofunika: Ngati mukuganiza kuti mwasoka cholumikizira, musayese kuchibwezeretsa pamalo pake nokha. Kuchita zimenezi kungayambitse kuwonongeka kwina. Pitani ku chipinda chadzidzidzi (ETU) nthawi yomweyo. Nthawi zina, opaleshoni ingafunike kuti mukonze cholumikizira chomwe chasoka.

Mitundu ina ya EDS, makamaka matenda a mitsempha otchedwa vascular Ehlers-Danlos syndrome omwe atchulidwa kale, angayambitse mavuto omwe angawononge moyo. Mtundu uwu ungayambitse kuphulika kwa mitsempha yamagazi. Izi zingayambitse kutuluka magazi m'thupi, zomwe zingayambitse matenda oopsa monga sitiroko .

Anthu omwe ali ndi matenda a EDS awa ali pachiwopsezo chachikulu cha kuphulika kwa ziwalo. Matumbo ndi chiberekero cha mayi wapakati ndi ziwalo zomwe zimatha kuphulika kwambiri.

Mavuto omwe mungakumane nawo amadalira mtundu wa EDS womwe muli nawo. Mavuto ena angaphatikizepo:

• Mavuto a ma valve a mtima (ma valve omwe amapopa magazi sagwira ntchito bwino).
• Kupindika kwakukulu kwa msana (scoliosis).
• Kuchepa kwa cornea ya maso.
• Miyendo yowerama.
• Mavuto a mano ndi chiseyeye.

Kodi matenda a Ehlers-Danlos amawapeza bwanji?

Dokotala adzadziwa ngati muli ndi Ehlers-Danlos syndrome mwa kukuyang'anirani mwakuthupi ndikulemba mbiri yanu yachipatala. Adzayang'ana khungu lanu ndi mafupa anu, ndikukufunsani za zizindikiro zanu. Uzani dokotala wanu nthawi yomwe munayamba kukhala ndi zizindikiro komanso ngati zizindikiro zanu zimakula kwambiri mukachita zinthu zina.

Popeza anthu ambiri omwe ali ndi EDS sangapeze kusintha kwa majini komwe kwadziwika, madokotala nthawi zambiri amapanga matenda potengera zizindikiro ndi mbiri yachipatala.

Kodi matenda a Ehlers-Danlos amachiritsidwa bwanji?

Dokotala wanu adzakulangizani chithandizo cha matenda a Ehlers-Danlos kuti akuthandizeni kuwongolera zizindikiro zanu ndikupewa mavuto oopsa. Chithandizo choyenera kwa inu chidzadalira mtundu wa EDS womwe muli nawo komanso momwe umakhudzira minofu yanu yolumikizirana.

Zina mwa njira zochiritsira zomwe zimagwiritsidwa ntchito kwambiri ndi izi:

• Kuteteza khungu lanu: Gwiritsani ntchito zodzoladzola zoteteza ku dzuwa mukamapita padzuwa, ndipo gwiritsani ntchito sopo wofewa womwe sungawononge khungu. Popeza khungu ndi lofewa kwambiri, liyenera kusamalidwa bwino.
• Kuchita masewera olimbitsa thupi: Kuchita masewera olimbitsa thupi kuti kulimbikitse minofu yozungulira malo olumikizirana mafupa. Izi zimathandiza kwambiri malo olumikizirana mafupa ndipo zimachepetsa kuuma kwa malo olumikizirana mafupa.
• Kuvala zomangira: Madokotala angakulangizeni kuvala zomangira zapadera kuti zithandize kwambiri mafupa ndikuwapangitsa kukhala olimba.

Chifukwa anthu omwe ali ndi Ehlers-Danlos ali pachiwopsezo chachikulu chotenga matenda a osteoarthritis ndi mavuto ena a mafupa, dokotala wanu angakuuzeni kuti mupewe zinthu zina. Mwachitsanzo:

• Kunyamula katundu wolemera (kunyamula katundu wolemera).
• Kuchita masewera olimbitsa thupi amphamvu kwambiri - mwachitsanzo kuthamanga, kulumpha.
• Masewera okhudzana ndi kugonana - mwachitsanzo rugby, mpira wamiyendo.

Kodi matenda a Ehlers-Danlos angapewedwe?

Mwatsoka, ayi, Ehlers-Danlos syndrome singathe kupewedwa . Popeza sitingathe kuwongolera kusintha kwa majini komwe kumayambitsa matendawa, palibe njira yopewera EDS. Ngati mukuda nkhawa kuti mungapereke EDS (kapena vuto lina la majini) kwa ana anu, lankhulani ndi dokotala wanu za upangiri wa majini .

Ngati ndili ndi EDS, ndiyenera kuyembekezera chiyani?

Ngati muli ndi Ehlers-Danlos syndrome, muyenera kusamalira zizindikiro zanu kwa moyo wanu wonse. Palibe mankhwala pakadali pano . Komabe, mukaphunzira kusamalira zizindikiro zanu, muyenera kubwerera ku zochita zanu zachizolowezi. Mungafunike kupewa kuchita masewera olimbitsa thupi otopetsa (monga masewera olimbitsa thupi).

Matenda a Ehlers-Danlos sakhudza aliyense mofanana. Zimene mumakumana nazo zimadalira mtundu wa EDS yomwe muli nayo komanso kuopsa kwa zizindikiro zanu. Funsani dokotala wanu zomwe mungayembekezere kutengera vuto lanu.

Kodi munthu amene ali ndi matenda a Ehlers-Danlos amakhala ndi moyo wautali bwanji?

Mitundu yambiri ya EDS siikhudza moyo wanu, zomwe zikutanthauza kuti siifupikitsa moyo wanu.

Komabe, ngati muli ndi mtundu wa EDS womwe umakhudza mitsempha yamagazi (monga vascular Ehlers-Danlos syndrome), mungakhale pachiwopsezo chachikulu cha sitiroko kapena mavuto ena oopsa a mitsempha yamagazi.

Ngakhale mutakhala ndi matenda a mitsempha ya magazi otchedwa vascular Ehlers-Danlos syndrome, dokotala wanu angakuthandizeni kupeza chithandizo ndi kusintha moyo wanu zomwe zingakuthandizeni kukhala ndi moyo wabwino komanso wathanzi. Lankhulani ndi dokotala wanu za zizindikiro za mavuto oopsa omwe muyenera kusamala nawo.

Kodi ndimadzisamalira bwanji?

Yang'anirani zizindikiro zanu ndipo pitani kwa dokotala ngati muwona kusintha kulikonse. Dokotala wanu adzakuuzani kangati komwe muyenera kubwera ku chipatala kuti mukayang'anire kusintha kwa thupi lanu. Adzasintha chithandizo chanu ngati pakufunika kutero.

Pewani masewera olimbitsa thupi omwe amakhudza kwambiri thupi. Kuchita masewera olimbitsa thupi mopitirira muyeso, monga masewera omwe amakhudza thupi, kumawonjezera chiopsezo chovulala mafupa anu (makamaka mafupa odumphadumpha).

Ndiyenera kupita liti kwa dokotala wanga?

Kaonaneni ndi dokotala ngati khungu lanu kapena mafupa anu akumva kufooka, kutayirira, kapena kusintha kulikonse m'thupi lanu. Kaonaneni ndi dokotala ngati mwayamba kuvulala pafupipafupi kuposa kale kapena ngati mukumva ngati mukutuluka magazi.

Kodi ndiyenera kupita ku Dipatimenti Yothandiza Anthu Odwala Pangozi (ETU) liti?

Ngati inu kapena munthu amene muli naye ali ndi zizindikiro za sitiroko , pitani kuchipatala mwamsanga kapena imbani 1990.

Dziwani zizindikiro zochenjeza za sitiroko ndipo kumbukirani KUKHALA MOFULUMIRA :

• B - Kulinganiza: Samalani kuti kulinganiza kutayike mwadzidzidzi.
• E - Maso: Yang'anani ngati maso anu atayika mwadzidzidzi m'diso limodzi kapena onse awiri, kapena ngati maso anu awona kawiri.
• F - Nkhope: Uzani munthuyo kuti amwetulire. Yang'anani mbali imodzi kapena zonse ziwiri za nkhope kuti zigwedezeke. Ichi ndi chizindikiro cha kufooka kwa minofu kapena kusagwira bwino ntchito.
• A - Manja: Apempheni kuti akweze manja onse awiri. Ngati pali kufooka mbali imodzi (ngati sikunakhalepo kale), mkono umodzi udzakwezedwa pomwe winayo udzagwa.
• S - Kulankhula: Munthu akagwidwa ndi sitiroko , nthawi zambiri amataya luso lolankhula. Angalankhule monyodola, asamalankhule bwino, kapena amavutika kusankha mawu oyenera.
• T - Nthawi: Nthawi ndi yofunika kwambiri, choncho musazengereze kupeza thandizo! Ngati n'kotheka, yang'anani nthawi ndipo kumbukirani nthawi yomwe zizindikiro zanu zinayamba. Kuuza dokotala nthawi yomwe zizindikiro zanu zinayamba kungathandize kusankha chithandizo chomwe chili chabwino kwa inu.

Ndi mafunso ati omwe ndiyenera kufunsa dokotala wanga?

Mukapita kwa dokotala, mukhoza kufunsa mafunso monga awa:

• Kodi ndili ndi matenda a Ehlers-Danlos kapena china chake?
• Kodi ndili ndi mtundu wanji wa EDS?
• Kodi ndi chithandizo chamtundu wanji chomwe ndikufunika?
• Ndi zizindikiro kapena kusintha kotani komwe ndiyenera kuyang'anitsitsa?
• Kodi ndiyenera kubwera kangati kudzandionanso?
• Ngati ndikufuna kukhala ndi ana, kodi ndiyenera kuganizira za uphungu wa majini?

Matenda a Ehlers-Danlos (EDS) ndi matenda a majini omwe amakhudza luso lanu lopanga collagen, puloteni yomwe imathandizira minofu yanu yolumikizana. Izi zingapangitse khungu lanu, mafupa, ndi minofu ina kukhala yofooka komanso yosinthasintha kuposa masiku onse. Dokotala wanu angakuthandizeni kupeza chithandizo chothana ndi zizindikiro zanu ndikupewa mavuto.

Musaope kufunsa mafunso ndikulankhula ndi dokotala wanu. Zizindikiro za EDS zitha kukhala zosaonekera kwambiri, makamaka kumayambiriro. Dzidalireni nokha ndipo mverani thupi lanu. Ngati mukumva ngati zizindikiro zanu zikusintha, kapena ngati mukumva ngati chithandizo chanu sichikugwira ntchito, lankhulani ndi dokotala wanu.

Chidule ndi Uthenga Wopita Nawo Kunyumba

Chabwino, tsopano mwamvetsa bwino zomwe takhala tikukamba lero, Ehlers-Danlos Syndrome (EDS). Kumbukirani, iyi ndi matenda a majini omwe amafooketsa minofu yathu yolumikizirana, makamaka puloteni yotchedwa collagen.

• Zinthu zofunika kwambiri: Mafupa opindika mosavuta, opindika mosavuta, ofewa, ovulala mosavuta, khungu lotambasuka, kuvulala pafupipafupi, ndi kupweteka kwa mafupa/minofu ndizomwe zimafala kwambiri.
• Chifukwa: Kusintha kwa majini.
• Chithandizo: Kusamalira zizindikiro ndiye chinsinsi. Kuchiza thupi, kuteteza khungu, ndi kuvala zothandizira ngati pakufunika ndikofunikira. Kupewa kuchita zinthu zomwe zingakhudze kwambiri ndikwanzeru.
• Chofunika kwambiri: Ngati muli ndi zizindikiro izi, kapena ngati wina m'banja mwanu ali ndi vutoli, ndikofunikira kupita kwa dokotala kuti akakupatseni upangiri. Musafulumire kuganiza nokha.

Kukhala ndi vutoli kungakhale kovuta, koma ndi chithandizo choyenera komanso upangiri wachipatala, anthu ambiri amatha kukhala ndi moyo wabwinobwino komanso wotanganidwa. Simuli nokha, pezani thandizo.

Matenda a Ehlers -Danlos, minofu yolumikizana, kolajeni, kufooka kwa mafupa, kulimba kwa khungu, matenda a majini, EDS, kusuntha kwambiri