Marfan Syndrome Support Group

I am in the same boat as you except no shoulder dislocations. My knees are subluxating all the time, my hips go in and out, i have aches and pains all the time. I have degenerative disc disease. I am 6' tall-I can touch the ground with my hands flat on the floor despite my back issues. I am very limber. I have a 17 year old son who is 6'2 and fits Marfan traits. He is tall, thin, angular face, hypermobility of his fingers, stretch marks on his hips/buttocks and he is very thin. I would get it checked out. I would go to cardio doc and opthomologist for evaulation. If you think you have it, go! I am seeing a genetics doctor in July. I have seen a rhumetoid doctor but he just passed it off as nothing...stress. How can your knees and hips go out due to stress? Can anyone explain that to me????????

The only clue I got as to possibly having a connective tissue disorder is when I had my echo. The technician asked me if I had ever been diagnosed with connective tissue disorder? I said "no". Never thought again about it until a couple of days after test. I asked myself, "why would she have said that"? I started reading some and boy, do I fit the bill for connective tissue disease..so does my son. Maybe we don't have it, but sure do fit the profile. I also have a lot of other symptoms that resemble MS...all too hard to figure out.

I had MVP diagnosed when I was 10 but now my cardiologist cannot locate any MVP...so that is good. Still does not help figure out what is going on with me. I feel your pain...literally.

If your 17 years old grandson is having a tear in his valve at that age...go get checked. You possibly could have this disorder.

Keep in touch and let me know what happens!

Jennifer

I thought I was the only one who could put their palms flat on the floor directly in front of their feet without bending their knees. Thats because our arms are so long. I was a blue baby. I had a hole in my heart that eventually closed on it's own even though I still have a heart murmer.

Are you going to get checked? Just checking in with you to see what you plan to do? Good Luck!

Well, I think you both have it...sorry, lol...BUT you REALLY need to see a doctor that specializes in it...It will most likely be a heart doctor, that has the knowledge....look it up...I think you can through "marfan national" web site....

But can I stress any more how VERY important it is you find out sooner than later....it could save a life....

When a person is diagnosed with Marfan the necessary changes are put into action that could save a life....do not put this off, if you think it could be marfan....

You can still live a good long and healthy life :)

I have marfan syndrome. one of the tests to see if someone has marfans is measure the armspan, if it is longer than the height of the person it is a good indicator that u have marfans. Also a concave chest (in my case it is the opposite) Scoliosis is also an indicator. Also because marfans affect the connective tissue and caused the body to grow differently there can be other physical signs such as disproportioned body parts. I have an extremely short torso and super long legs, fingers, arms, and toes. I do not know where u are from but one of the leading drs for marfans is Dr Heidi Conolly at the Mayo Clinic in Rochester, MN. I would def recommend her. And keep going to see a cardiologist! I'm 26 years old and have had 2 heart surgeries because of marfans.

I.m going with my grandson to the cardiologist at his next appointment. He had his heart set on joining the marines but they told him that wouldn't be possible. They asked him a stupid question. What does he see in his future before they decide what to do.

I checked my arm span. It is 2 inches longer than my height

I only just heard about this yesterday through a friend and I've got to say that I fit the bill pretty well.
I'm 6ft2", very skinny, long fingers, toes, able to rotate both hands around 360degrees, seemingly unable to gain weight, crowded teeth, difficulties learning, neck and back pains etc. One shoulder is exactly 1cm higher than the other.
However, I've never had heart or lung problems, circulation problems in my legs etc.
Thing is I've got many of the symptoms but there are many that I do not have.

I'll be heading to the docs soon. Pretty freaked out.

Check out information at
http://marfan.org/marfan/
Please err on the side of caution...in other ords--get it checked out soon! Because, we care...
Stephanie

Marfan is highly variable; no two Maarfan folks will have exaactly the same symptoms. However, Marfan can be a killer, so caution is always appropriate. As for doctors asking a possible Marfan positive patient to speculate about his/her future, there are many careers and entertainment activities that Marfan folks should never participate in, and many others that should be done only with competent medical supervision.