Marfans Syndrome
By 3Dlace
@3Dlace (339)
United States
December 19, 2006 2:22pm CST
This is a genetic disorder that effects the tissues of your body, most of all your heart. Most people don't even know what Marfans is and they usually see a person with Marfans and dismiss them with eating disorders, mental disorders, and other non related health issues.
Before I was diagnosed with Marfans Syndrome, most doctors would tell me that I had an eating disorder and fast metabolism. I was in and out of hospitals due to severe heart flutters and continuiously passing out. When I had my heart examined by an echocardiogram they realized that I had a mitro prolapse valve which was due to my heart flutters. The passing out in public was due to low blood pressure.
I don't understand why doctors didn't see this before while I was growing up? After giving birth I have been on hart medication and I can not do the things I would love to be doing. Too much stress can put me back into the hospital.
Marfans Syndrome can be severe when a person with this disorder gets older. It effects the lungs, the heart, the bone structure, and eyes. The tissue that keeps everything in place (muscles and tendins) will seperate under harsh stress and strain. A bump on the head could leave me blind in one or both eyes.
A person with Marfans Syndrome has the following body structure:
their arm span (which usually measures to height of tallness) is much longer than normal - I am six foot one inch, my arm span is six foot five inches
thier weight fluxuates tremendously - I am one hundred pounds and can reach up to hundred and forty within two months
their roof of their mouth is deeper than normal - mine has a very large depth inside
their sternum (middle of chest) is bowed and protrudes out either slightly or a lot - mine is slight
they usually have crooked back bones, either slight or severe - mine is slight, my left shoulder is higher than my right and my back bone is slightly S shaped
they have a tendancy to have migranes, stomach problems, and agoraphobia - I have all three and sometimes all at once
I'm still gathering information, after all, I was diagnosed with this about four years ago and I'm always learning something new about it. Since it is a genetic disorder, I have passed it on to my daughter. All my information that I have written here came from a pamplet at www.marfan.org
3 responses
@GardenGerty (157546)
• United States
5 Jan 07
I have a friend who has an adopted son, who has marfan's syndrome. I did not realize it was genetic. I also guess I thought it mostly affects men. I hope for your daughter's sake,and for the sake of all affected by this disease that we learn treatments that are helpful.
@3Dlace (339)
• United States
6 Jan 07
There is a treatment that I would like to have done but only disability medical will pay for (or a private health insurance). It is a precendure that inserts a small device into the aorta (the main artery) to help prevent anurism (the artery from bursting and causing a heart attack). Somehow it stablizes the blood pressure in that artery.
They don't even have to cut you open to insert it either. They take a slender scope like tube and put it into your juggler vein (the neck artery) and place this small device into the aorta.
@debsstuff55 (19)
• United States
30 Dec 06
Hi, My son wasn't diagnosed until he was 15 although I told tha doctors there was something wrong even when he was an infant.I got lectures on nutririon, told I was a "smothering type" mother, told that many kids were just naturally skinny, told (believe it ornot) that he just took after his dad, well yeah, guess what turns out dad also has Marfans.
I think one of the reasons it is so underdiagnosed is that so many of the outward symptoms show up in the general population. You don't have to have Marfans to be tall, skinny, have flat feet, be nearsighted, have scoliosis etc.
My son is now on medication as I'm sure you are and I bless the nurse practitioner that finally listened to me and had him evaluated for Marfans.
The genetisist told me my other son also has the gene but his symptoms are mild and he shows no heart involvement yet.
Are you sure your daughter has it? After all it's a 50/50 chance that you will pass it on.
@moirax23 (317)
• Malta
16 Feb 07
Hi I'm very glad I found some info on Marfan's. I have quite a few features of this disorder, which nobody in my family has. I am tall 5ft 11, my fingers are tall and skinny and I had lost my eyesight from one of my eyes because of a bump in my head, like you said. I have my heart checked every 2 years which always results positively, thank God. Also my arm span exceeds my height by just 2cm - always have been like that. I do not have any children yet but should I be aware that they could get this disorder from me, even though I only have features from Marfan's? Please keep in touch and good luck with your daughter!
