Marwan ciwo shine mafi yawancin gadon da aka haɗu da shi na launi na haɗin kai , wanda yake shafar skeletal system, zuciya, da jini da idanu. Mutane da ke fama da ciwon Marfan yawanci suna da tsayi sosai, kuma makamai da kafafu sun fi tsayi. Har ila yau, suna da dogon yatsunsu (likitocin likitoci suna kira arachnodactyly), wani ɓangaren haɓaka na spine ( kyphoscoliosis ), da kuma rarraba ido ta idon ido .
Mafi yawan rikitarwa na rayuwa na Marfan ciwo yana da dangantaka da zuciya da tasoshin jini; musamman ma, ga anerysm na aorta . Anatarysm ne mai dila (fitarwa) na bango na jini jini. Wannan rushewa yana raunana bango na lalata, kuma yana sa ya zama rushewa a hankali (yanayin da likitoci suke kira dissection). Rashin fassarar kwayar cutar gaggawa ce ta gaggawa, kuma zai iya haifar da mutuwar kwatsam ga mutanen da ke fama da ciwon Marfan.
Tun lokacin da wannan masifa ta fi dacewa faruwa a lokutan da ake jaddada magungunan jini, motsa jiki, musamman, zai iya zubar da kwakwalwa a cikin mutumin da ke fama da ciwon Marfan. Saboda haka, matasa waɗanda ke fama da ciwon Marfan dole ne sau da yawa ƙayyade su shiga ayyukan wasan.
Yana da sauƙi ga matasa su ji cewa ayyukansu za su kasance iyakancewa. Abin farin ciki, yawancin mutanen da ke fama da ciwon Marfan zai iya zama masu aiki, amma tare da ƙuntatawa.
Yana da mahimmanci ga wadannan matasan 'yan wasa su fahimci iyakokin su.
Ƙwararren Gudanar da Harkokin Kasuwanci ga Matasan 'Yan Matasa Tare da Ciwo na Marfan
Shawarar da aka bayar game da shiga wasannin motsa jiki masu gasa ga 'yan wasan da ke fama da ciwon Marfan an wallafa su a shekara ta 2005 Bethesda taron akan shawarwari na cancanta ga mahalarta masu cin gaji tare da nakasassu na jini.
Ga taƙaitaccen shawarwari:
'Yan wasan da ke fama da ciwon Marfan ya kamata su sami labaran ƙwaƙwalwa a kowane watanni shida don neman dila daga tushen asalin.
Idan babu wani mawuyacin tushe ko kuma wani mummunan cututtuka na zuciya, kuma babu tarihin iyali na rarrabawar kwakwalwa, zasu iya shiga cikin abin da ake kira ƙananan ƙarfin hali, wasan kwaikwayo na wasan kwaikwayo - ayyukan da yawanci ba sa buƙatar "burst" na musamman -in motsa jiki. Misalan ayyuka masu dacewa sun hada da golf, wasan motsa jiki, hiking, da kuma wasan tennis.
Idan akwai shaida na dump dump, ko tarihin iyali na dissection aortic, to, kawai aiki mai ƙananan ƙarfi, irin su golf ko bowling, ya dace.
Mutanen da ke tare da ciwo na Marfan sun shawarce su su guje wa ayyukan haɗari - tuntuɓi wasanni da ayyukan da suke buƙatar motsa jiki na samfurin samar da aikin Valsalva (kamar karfin nauyi).
Wasu mutanen da ke fama da ciwon Marfan zasu iya watsar da su gaba ɗaya idan likitocin su (idan an yi la'akari da haɗarin su zama ƙananan ƙananan), don shiga cikin wasanni na haɗari kamar wasan kwando, baseball, taba kwallon kafa, da bike.
Hakanan, taron Bethesda da ke jawabi musamman ga mutanen da suke aiki, da wasannin motsa jiki.
Musamman ma, an ba da jagorancin makarantu da wasu kungiyoyi wadanda 'yan wasan da ke fama da ciwon Marfan suna neman shiga cikin shirye shiryen su. Ba ta musamman magance wasan wasan kwaikwayo ba.
Duk da haka, shawarwarin Bethesda har yanzu yana iya ba da jagorancin masu neman wasanni da likitocin su. A duk wanda ke tare da ciwon Marfan wanda yake so ya shiga wasanni, ana iya amfani da echocardiograms lokaci-lokaci don jagorancin matakin dacewa na aikin jiki.
Kalma Daga
Mutane da ke fama da ciwo na Marfan sun kasance sun kara haɗari ga abubuwan da ke faruwa na zuciya da jijiyoyin zuciya, kuma suna buƙatar bin biyan kuɗi.
Ana ba da izinin yin amfani da ƙuntatawa ga kowa da ciwon Marfan. Duk da haka, mataki na ƙuntatawa zai bambanta daga mutum zuwa ga mutum, kuma mutane da yawa suna iya (kuma suna ƙarfafa su) dasu da yanayin rayuwar aiki tare da kariya ta dace.
> Sources:
> Hiratzka LF, Bakris GL, Beckman JA, et al. 2010 ACCF / AHA / AATS / ACR / ASA / SCA / SCAI / SIR / STS / SVM Jagoran Bayanan Sanarwar Sanin Ciwon Halitta Da Gudanar da marasa lafiya Da Ciwon Cutar Thoracic. Jagoran, Ƙungiyar Amirka don Tashin Ƙasa, Cibiyar Harkokin Labaran {asar Amirka, {ungiyar Harkokin Lafiya ta {asar Amirka, {ungiyar Harkokin Kwayoyin Tsarin Lafiyar Nahiyar Amirka, {ungiyar Harkokin Lafiya ta Duniya da Harkokin Tsarin Mulki, Cibiyar Harkokin Tsarin Harkokin Ci Gaba da Cibiyar Harkokin Tsarin Harkokin Cutar Kasuwanci, Cibiyar Nazarin Siyasa ta Thoracic, da Cibiyar Nazarin Yammaci. Yanayi 2010; 121: e266.
> Maron, BJ, Ackerman, MJ, Nishimura, RA, et al. Ƙungiyar Taskoki 4: HCM da Sauran Cardiomyopathies, Ƙarƙashin Ƙarjiyar Ƙarƙashin Ƙarƙashin Ƙarƙashin Ƙarƙashin ƙwayar cuta, Ƙunƙasar Myocarditis, da Marfan Syndrome. J Am Coll Cardiol 2005; 45: 1340