Magungun kwayar cutar (MS) wani cuta ne mai rikitarwa wanda yake rinjayar kwakwalwa da ƙwararren ƙwayar cuta, wanda zai haifar da bayyanar cututtuka kamar gajiya mai tsanani, jin dadi, raunin zuciya, rashin tausayi, da matsalolin ciki da kuma mafitsara. Abin takaici, duk da bincike mai zurfi, masana basu riga sun gano ainihin "me yasa" a baya MS-da wannan rikice-rikicen da ke kewaye da shi ya sa ya wuya a sami magani.
Wannan ya ce, bisharar ita ce, ta hanyar bincike mai zurfi, sani da ilmi, mutane da yawa suna rayuwa tare da MS kuma rashin lafiyar cutar sun ragu saboda bayyanar da sababbin cututtuka . Duk da haka, duk da waɗannan ci gaba mai ban sha'awa, karin aiki dole ne a yi. A nan ne manyan kungiyoyin da ke da kwarewa wajen samar da mafi kyawun rayuwa ga wadanda suke tare da MS da kuma samun kyakkyawan magani ga wannan cuta mai lalata da rashin jin dadi.
Ƙungiyar Ƙwararriyar Ƙwararrun Ƙasa
An kafa kamfanin MS (NMSS) a 1946 kuma yana zaune ne a Birnin New York, ko da yake yana da sassa wanda aka warwatse a ko'ina cikin ƙasar. Manufarta ita ce ta ƙare MS. Amma, a halin yanzu, wannan} ungiya mai zaman kanta ba ta da mahimmanci don taimakawa mutane su rayu da cutar ta hanyar samar da bincike, samar da ilimi na yau da kullum, inganta wayar da kan jama'a, da kuma samar da al'umma da shirye-shiryen da ke bawa mutane da MS da 'yan uwa don haɗi da inganta halayen rayuwarsu.
Samun shiga
Babban manufar NMSS ita ce inganta haɗin kai a tsakanin mutane tare da MS da 'yan uwansu, abokai, da kuma ma'aikata-ƙungiya don neman magani, don haka. Akwai abubuwa da yawa da NMSS ta tsara a duk faɗin ƙasar da ku da kuma ƙaunatattunku zasu iya shiga tare da ku, kamar shiga cikin MS Walk ko MSiki na Bike MS ko kuma zama wakilin MS.
Resources
Shirin bincike da ilimi sune manyan albarkatun NMSS. A gaskiya ma, jama'a sun kashe fiye da dolar Amirka miliyan 974 a cikin bincike har zuwa yau, kuma suna da matukar goyon baya wajen tallafawa bincike wanda ba kawai mai ban sha'awa ba, amma hakan zai canza fuskar MS don mafi kyau.
Wasu shirye-shiryen da suka dace na NMSS da suka goyi bayan NMSS sun hada da bincike game da muhimmancin abinci da abinci mai gina jiki a cikin MS, tsarin wayar salula, da kuma yadda za a gyara gyaran fuska na myelin don sake farfado da aikin. Bugu da ƙari ga shirye-shiryen bincike, wasu kayan aikin da NMSS ke bayarwa sun haɗa da al'ummomin goyon bayan yanar gizo da kuma MS Connection Blog.
Ƙungiyar Sclerosis ta Amirka
Ƙungiyar Ƙwararrun Sclerosis na Amurka (MSAA) wata kungiya ce mai zaman kanta ta kasa wadda aka kafa a shekarar 1970. Babban manufar shine samar da ayyuka da goyan baya ga al'ummar MS.
Samun shiga
Ɗaya hanyar da za ta shiga tare da MSAA ita ce ta zama "mamba na titin titin," wanda ke nufin cewa ka yada kalma game da Swim for MS collectraiser da kuma wayar da kan jama'a game da MS. Ana iya yin hakan a kusan (ta hanyar kafofin watsa labarun) ko ta hanyar yin magana da kasuwanci da kungiyoyin jama'a.
Resources
Shafukan intanet na MSAA ne abokantaka kuma yana ba da kayan aikin ilimi. Ɗaya daga cikin matakai masu motsawa shine Sauye-sauye na Rayuwa na yau da kullum zuwa S na bidiyo wanda ya nuna yadda MSAA ke taimaka wa wadanda suke tare da MS (misali, samar da kayan wankewa na mata ga wanda yake da fushin MS tare da bayyanar zafi).
Har ila yau, wani amfani mai mahimmanci shine aikace-aikacen waya na My MS Manager, wanda yake kyauta ga mutane tare da MS da abokan hulɗarsu. Wannan ƙari na zamani yana ba wa mutane damar bin hanyoyin maganin cutar MS, adana bayanai na kiwon lafiya, haifar da rahotanni game da bayyanar cututtuka na yau da kullum, har ma da haɗuwa da sashen kula da su.
Ci gaba Cure Project for Multiple Sclerosis
A matsayin ƙungiya mai zaman lafiya wanda ba a rika ba da riba ba, aikin na Ci gaba da Ƙaddamar Cure don MS (ACP) shine a hanzarta binciken bincike don samun magani.
Samun shiga
Baya ga ba da gudummawa, akwai wasu hanyoyi don shiga cikin wannan rukunin ciki har da:
- Aiwatarwa ga Mary J. Szczepanski "Kada ku daina" Scholarship na MS
- Fara fararen rubutun harafi
- Gudanar da mai karɓar ACP
Resources
Abin sha'awa shine, ACP tana ƙunshe da babbar tarin (fiye da dubu uku) samfurori da bayanai daga mutanen da ke zaune tare da MS da sauran cututtukan demyelinating. Masu bincike za su iya amfani da wannan bayanan sa'an nan kuma mayar da sakamakon zuwa ACP daga nazarin su. Dalilin wannan shafin da aka raba shi ne mafi kyau kuma da sauri samun magani ga MS.
Har ila yau, akwai albarkatun ACP da ke inganta haɗin kai da kuma haɗin kai-tare-da-sauran a cikin kungiyar MS, ciki har da MS Discovery Forum da kuma MS Network.
MS Focus: Ƙarin Sclerosis Foundation
An kafa asusun Multiple Sclerosis (MSF) a shekara ta 1986. Abinda ya fara mayar da hankali ga wannan kungiyar ba riba ba shine samar da ilimi ga mutane tare da MS a kan inganta rayuwar su. A tsawon lokaci, MSF ta fara bada sabis ga mutanen da ke tare da MS da kuma ƙaunatattun su, ban da samar da kayan ilimin ilimi mai kyau.
Samun shiga
Wata hanya mai ban sha'awa don shiga tare da MS Focus (idan kana da MS) shine la'akari da zama Ambassador na MS. A cikin wannan shirin, jakadu suna fadada wayar da kan jama'a game da MS a cikin al'ummarsu, tsara da kuma jagorantar masu karɓar kudi, da kuma taimakawa wajen haɗa waɗanda ke tare da MS da ƙungiyoyin kulawarsu da ayyukan da MS Focus ta bayar. Mutane masu sha'awar wannan shirin dole ne su fara amfani da su, kuma, idan sun yarda, za su sami horo na musamman don koya musu game da rawar da suke takawa.
Wata hanyar da za ta shiga (ko kuna da MS ko a'a) shi ne don neman samfurin wayar da kan jama'a daga MS Focus a lokacin Ma'aikatar Ilimi na Ƙasa da Tsaro ta kasa ta watan Maris. Ana aika wasikar kyauta ta kyauta zuwa gidanku kuma ya ƙunshi kayan ilimi don taimakawa wajen fadakarwa game da MS a cikin al'ummar ku.
Resources
MSF tana samar da kayan ilimi da yawa, ciki har da mujallar MS Focus, shirye-shirye na jihohi, da kuma ɗakunan karatu na mutum. Har ila yau, yana taimaka wa waɗanda ke tare da MS tare da cutar ta hanyar samar da kungiyoyi masu tallafi da kuma wasu nau'o'in motsa jiki kamar su yoga, tai chi, dabarun ruwa, doki, da kuma shirye-shiryen bidiyo.
Bugu da ƙari, Cibiyoyin Kula da Lafiya na Ma'aikata ne abokin tarayya na Ƙarin Sclerosis. Wannan cibiyar yanar gizo ce ta kyauta ta kan layi ta hanyar layi wanda ke bawa mutane tare da MS don bincika masana'antar lafiyar da masu dacewa a yankunansu.
Za a iya yin MS
Za a iya yin MS, ta hanyar cibiyar Jimmie Heuga na Multiple Sclerosis, wata ƙungiya ce mai zaman kanta wadda ba ta ba da gudummawa ga mutane tare da MS don ganin kansu da rayukansu fiye da cutar. An kafa wannan tushe ne a shekarar 1984 ne daga wani dan wasan Olympics Jimmie Heuga, wanda aka gano tare da MS lokacin da yake dan shekara 26. Furofesa ta "lafiyar mutum", wanda ya haɓaka ba kawai lafiyar jiki ba har ma lafiyar mutum da lafiyar mutum, wata manufa ce ta farko na Can Do MS.
Samun shiga
Hanyoyin da za a iya shiga tare da Can Do MS shine don karɓar bakuncin taron kuɗi, inganta ka'idodin ilimin harshe wanda ke mayar da hankali akan aikin, abinci mai gina jiki, da kuma gudanar da alamar alama, ko kuma ba da gudummawa ga tushe kai tsaye ko kuma ga Jimmy Huega Scholarship fund.
Resources
Za a iya MS offers webinars a kan wasu batutuwa masu dangantaka da MS, kamar maganganun rashin lafiya, matsalolin inshora, matsalolin kulawa, da kuma rayuwa tare da ciwo da baƙin ciki MS. Har ila yau, yana bayar da shirye-shiryen koyarwa na musamman a cikin mutum, kamar shirin kwana biyu na TAKE CHARGE wanda mutane da MS ke hulɗa da wasu, abokan hulɗar su, da ma'aikatan kiwon lafiya na masana'antu na MS yayin rarraba abubuwan da suka shafi mutum da kuma koyo game da halaye na rayuwa mai kyau.
Mountain Center MS Center
Ofishin Masaukin Ƙungiyar Rocky Mountain MS na da ƙwarewa ga MS kuma don samar da ayyuka na musamman ga wadanda ke zaune tare da yanayin. Wannan cibiyar yana samuwa ne a Jami'ar Colorado, wanda shine ɗaya daga cikin manyan shirye-shirye na MS a duniya.
Samun shiga
Idan kana zaune a waje na Colorado, zaka iya zama abokin tarayya, inda kake sanya ajiyar wata don tallafawa cibiyar. Ko kuma za ka iya yin la'akari da bayar da kyautar motarka zuwa Vehicles for Charity.
Idan kana zaune a Colorado, zaku iya samar da tawagarku ta hanyar tseren hijirarku kuma ku shiga tare da Multiple Summits ga MS, ku halarci karbar shekara ta shekara, ko ku zama mamba na Cibiyar Kasuwancin Matasan.
Resources
Cibiyar ta MSY ta Rocky ta samar da wasu kayan ilimi, ba kawai ga wadanda suke tare da MS ba, amma ga iyalai da masu kula da su. Abubuwa biyu masu daraja sun hada da:
- Binciken MS: Binciken kyauta na kyauta, mai kwata kwatacce a cikin bugawa ko dijital da ke samar da sabuwar a kan bincike na MS da kuma bayanan psychosocial ga wadanda ke zaune tare da MS
- eMS News: Wata kasida wadda take samar da gwajin bincike na MS-kwanan nan da sakamakon
Cibiyar ta Rocky Mountain MS ta kuma bayar da hanyoyin kwantar da hankali, kamar hydrotherapy, Ai Chi (ruwa na Tai Chi), kazalika da ba da shawara, kwarewar rashin lafiya, katin ID na MS, da kuma shirin ba da rancen matasan girma don jinkirin jinkiri.
Kalma Daga
MS yana shafar mutane musamman, wanda shine dalilin da ya sa yin maganin cutar da kuma sarrafa alamunta zai iya zama aiki mai banƙyama. A wasu kalmomi, babu mutane biyu suna da matsala guda MS.
Wancan ya ce, yayin da ƙungiyoyi na MS sun ci gaba da yin yaki don maganin lafiyar su da kuma samar da ayyukan da ke taimakawa mutane suyi rayuwa da cutar, yana da muhimmanci a ci gaba da kasancewa a cikin hanyar MS.
> Sources:
> Birnbaum, MD George. (2013). Multiple Sclerosis: Jagorar likita ga Bincike da Kulawa, Edition na 2. New York, New York. Oxford University Press.
> Ziemssen T. Symptom Management a cikin marasa lafiya tare da Multiple Sclerosis. J Neurol Sci . 2011 Dec; 311 Samar 1: S48-52.