Marfan's Syndrome
By debsstuff55
@debsstuff55 (19)
United States
December 29, 2006 7:52am CST
Both of my sons have a genetic disorder called Marfan's Syndrome. Marfan's Syndrome affects the connective tissues all through the body. It affects the skeletal system, causing the bones to grow wrong, resulting in long, skinny bones and thus, for most sufferers a very tall and skinny body type. It also affects the eyes, sometimes causing the lens to dislocate but almost always causing near sightedness, sometimes severe.
The biggest problem though, is that it affects the ciculatory system, causing key arteries (usually the aorta right near the heart) to distend and eventually burst. Undiagnosed and untreated Marfans can lead to death from a dissection of the aorta at a very early age. People with Marfans are told not to participate in sports or strenuous exercise for this reason.
The reason for this post is twofold. To inform others about the disease and to perhaps make contact with others who have or have a loved one affected by it.
1 person likes this
3 responses
@cpamanda (693)
• United States
3 Jan 07
Wow, I have not heard of this before. I appreciate the information and I am so very sorry for your family. I will pray for you all. Maybe by posting a response, this will put you back out in the discussions and someone else will see it who can relate. I hope so. Good luck! AND---not related but I am reading "Creating Moments of Joy" and I truly appreciate the advice you gave me. Thanks!
@moirax23 (317)
• Malta
16 Oct 07
Hi all! I do not have Marfan's although I've always been very tall. At about the age of 6 my mother started taking me to regular check-ups at the hospital where they told me I have 7 features of this condition. Some of them are my length, eyes' lense have dislocated as I grew older, my fingers and toes are long and skinny. Also when I was little they used to check the measurements from hand to hand (when I open my arms) it always exceeds the length from head to toe. (It's like that now too)!
I think there are more features but I don't know exactly. Do you know - is tiredness one of the features?
Thanks so much for sharing this story I felt relieved reading it and its reply! Knowing that there are others like me 8)
@Kentenathien (31)
• United States
19 Mar 07
Hi! I'm a 26yo male from California. I have Marfan's Syndrome! I have the skeletal features, long face, arachnodactyly, overly long arms and legs. I have Chronic Obstructive Pulmonary Disease (emphysema), mitral valve prolapse and aortic dilation. I am only recently coming to terms with it. It scares me because I basically started living life later than most because of agoraphobia and anxiety disorders and am barely in college now so im always worrying about the duration of my life. However, i'm on beta blockers and hopefully I can keep my aortic root dilation in check. I hate not being to exercise much cause I used to be pretty active. It's good to know that there are others out there like me though.
