Marfan Syndrome Support Group
Marfan syndrome is a connective tissue disorder characterized by unusually long limbs. The most serious conditions associated with Marfan syndrome primarily involve the cardiovascular system. Marfan syndrome may cause leakage of the mitral or aortic valves that control the flow of blood through the heart. This may produce shortness of breath, an irregular pulse, and undue...
Hi, I was very shocked and please to find this site....Marfan seems so rare to hear about....I love that there is a site here....
Anyways, I personally do not have Marfan but several members of my step family (that I have been with since birth) do....some worse than others. My step mom died of Marfan 12 years ago, she had it pretty bad, as did her brother. During her life though she was the most amazing woman I have ever known. She had a non-profit organization for her brother and I want to do the same for her. I hope to be able to spread awareness, so that those that suffer can get the help that could save thier lives. With treatment and being watch by a doctor chance can greatly increase your life expectancy. Also I want to raise money for research. I do believe that one day they will be able to find a cure for those that have this rare syndrome.
I am not sure if I have any questions as of YET....but I am excited to get to know you all. If you have any questions for me feel free to ask...
Thanks
Ashley
Anyways, I personally do not have Marfan but several members of my step family (that I have been with since birth) do....some worse than others. My step mom died of Marfan 12 years ago, she had it pretty bad, as did her brother. During her life though she was the most amazing woman I have ever known. She had a non-profit organization for her brother and I want to do the same for her. I hope to be able to spread awareness, so that those that suffer can get the help that could save thier lives. With treatment and being watch by a doctor chance can greatly increase your life expectancy. Also I want to raise money for research. I do believe that one day they will be able to find a cure for those that have this rare syndrome.
I am not sure if I have any questions as of YET....but I am excited to get to know you all. If you have any questions for me feel free to ask...
Thanks
Ashley
Thanks and welcome. Marfan is a genetic disease, and genetic diseases are really attractive for medical researchers now, so breakthrough are coming thick and fast. Whether medical science will soon cure Marfan is another matter, but we can all hope and pray.
thanks Paxton
and how do you see more light (or public awareness) being brought to Marfan or do you?
But if you could tell someone to go out and do something, anything, (other than the medical research) to go out and help find that cure, or to help others, what would you tell them to do?
I guess what I am asking now, is what do you think one person can do to help make a difference to those that suffer? I do want to start a chapter, I am nervous the more I look into it, but there is nothing in my community that reaches out...Is that the best way I can help? I am unsure...
There is a Marfan Foundation in the USA. I doubt that advertising it here would be legal. However, you can look it up on Google. Its chapters around the USA host numerous fundraisers, lobby congress to secure funding for genetic research, and support Marfan patients in numerous ways, such as day camps for youngsters with Marfan, patient training and advocacy, and and patient networking. I do not know where you live; however, if you contact the marfan Foundation, you ought to be able to link up with a Marfan support group in your area. Good luck.