My son has 9 symptoms of Marfan Syndrome and was only identified after sepaking to a work collegue of mine. Alot of people are not aware of Marfans Syndrome and thats why i am wanting to raise money for the marfans association team who send leaflets out to people including doctors they try and do events to make people more aware of this i am going to be doing some fundraising events too. In the meantime if anyone would like to donate to make more awraeness and help people with marfans syndrome live longer then please donate evry little helps.
What is Marfan Syndrome?
Marfan syndrome is one of the more common disorders of connective tissue that can affect the Eyes, Skeleton, Lungs, Heart and Blood Vessels, and may be life-threatening. The effects of Marfan syndrome varies between individuals, some people only being mildly affected.
Marfan syndrome is a hereditary disorder in 75% of cases whilst being spontaneous in the other 25%. This means that if a parent has Marfan syndrome, there is a 50/50 chance of each child not inheriting the Marfan gene. The Marfan gene was discovered in 1990 and in 1991 a deficiency was found in the glycoprotein, fibrillin. This initiated many research projects and diagnosis has improved because of the results achieved.
Through the work undertaken by the Marfan Association UK, in conjunction with a large number of medical professionals over many years, much has been learned about Marfan syndrome. Greatly improved medical management and surgical techniques are now available which are improving the lives of Marfan patients around the world.
Regular monitoring and a sensible life-style are essential.
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