By CH on Friday, January 09, 2004 - 10:34 pm:

What do yall think. Sorry, this may be a bit long.

I had never heard of marfans until somewhat recently when I came across a link about it. It had me wondering for a bit there, but after reading a website about it, and the symptoms, and how you are diagnosed, I am more at ease. I had some of the symptoms, but did not have any of the major criteria they look for. I had a few of the minor criteria, most of which alot of people probably have.

I'll explain myself.

- I am tall. I am 6'4"-6'5". My family is about average height. My dad is 5'11", my mom is about 5'4". My sisters are tall, at 5'7" and 5'8", so I am not alone.

- My arm length is long, being as though I am tall, but not longer than my height from what I can measure.

- I don't have any heart problems. I don't get winded easily or anything like that. I am training for a 10K race and triathlon coming up, so am doing plenty of running, biking and all.

- My fingers are long I guess, but not abnormily. I would think for someone my size, they are probably normal. I've seen people, who have fingers as long or longer than mine, who are much shorter than me.

- I am not very flexible. Sure, like anyone, there are parts I can probably flex farther than the person standing next to me, just like he/she can flex something farther than the guy/gal next to him/her Im sure. But I am not very flexible at all.

- My chest has a slight "dip" in it, more it appears I think because of the way my muscle, etc. is in that area. When I pull that flat, it looks normal. A slight dip think is normal, most people have it. Nothing that has caught anyones attention or has caused problems or anything like that.

- I have sprained my ancle a couple of times, but when I have, it has been in such a way, that anyone would have sprained it. I jumped to dunk a basketball and landed completely wrong. My friend did the same things only weeks later. Nothing really abnormal about this. I don't have a history of dislocations or sprains or anything like that.

- My eyes are not perfect. I dont have the best vision of things far away, but dont find myself needing glasses really at all. Both my mom and dad have bad eyes, so does my sister and brother. My other sister is the only one without problems seeing afar. So it seems normal, as runs in my family, and I didnt even need glasses really until I started taking flying lessons, and the doctor giving me a physical said I needed them. But of course, anyone who does not have 20/20 when flying, basically needs them, so nothing abnormal there. Other than that, I dont need glasses throughout the day for anything else.

- My legs are not abnormally long, they are about average for someone my height. I wear a 34 length in pants. I know someone who is between 6'1"-6'2" who wears 32 inch pants, so I would assume this is normal.

- I guess I have what you could call a "lanky" frame, but not really that much. I have more of a "straight" up frame, with some lanky features, as most tall people somewhat have. I am not like a geeky, lanky type look, if you understand what I am saying, and from my describing my arm and leg lengths, you probably get the picture.

- I am thin, but being as though I am a teenager, and also into fitness and health, it has something to do with it. I used to not be so thin, I was in a 34-35 inch waste, but since into fitness and health am into a 32. so I am, always have been "thin", but not like skin and bones, if you understand. I have a more thin, lean athletic type build. Like a Randy Moss or Aaron Brooks build, I guess if I can give you a bit of a picture, but probably not quite as long of arms as Aaron Brooks.

- I do have stretch marks. They are from growing and weight gain. At one time I put on about 20lbs of weight in about a year, year & 1/2. Which I guess isn't much, but I did really begin to fill out, and between that and growing tall, my skin couldnt handle it in some places. The places I have them are the places I "filled out" in, and areas where you commonly see them due to growth. All seems normal to me. They have and are fading, and honestly arent too bad. Mainly they are on my lower back, buttox area, and a few around my very low, side of my abdomen.

- Basically, I have a few of the minor symptoms, but as I said, most seems to be due to usual reasons from what I can see. I dont have any other "problems" if you will, myself or no one has ever suggested that I have something. Sure I have gone through awkward phases growing, etc., but overall things are pretty well proportioned. My feet are normally arches, also, to add that in, etc. Also, it does not run in my family, from what I know. Neither my mom nor dad has it. Although they havent been tested, neigther have any problems, and really no symptoms, other than, as mentioned, the usual that most people might have. Some I dont know why they list as symptoms, because they are so frequent among different people. I understand you can get it even if neither parent has it, but it is even more rare that way from what I understand, and also is usually a much more severe case if received that way.

I am not asking anyone for a diagnoses, but just want some feedback, I know If I really wanted to know, I should see a doctor. I think I am probably just a normal tall guy, who is paranoid a bit, as many would/ have been when reading symptoms of something.

Thanks.

By Midhelle Castle on Tuesday, January 13, 2004 - 10:58 pm:

CH,

According to the US National Institue of Health (http://www.niams.nih.gov/hi/topics/marfan/marfan.htm), for a patient with no family history of the disease, at least three body systems must be affected before a diagnosis is made. Moreover, two of the systems must show clear signs that are relatively specific for Marfan syndrome. By that standard, I don't think you'd be diagnosed with it. You may have some minor skeletal abnormalities, but nothing specific to Marfans. (I doubt you'd meet the skeletal involvement criteria though - without any significant history of joint dislocations, scoliosis, or other orthopedic abnormalities.) You don't have problems with your eyes that are specific either - like dislocations of the lens in one or both eyes. You don't seem to have any cardiovascular problems or nervous system problems like pain or numbness. And some stretch marks from growth and weight-loss is also inconclusive, non-specific "symptoms". Without anything more specific or a family history, I wouldn't worry about Marfans.

As for why such common symptoms\characteristics are included in diagnostic criteria, I'd bet it's because those common characteristics are much more common in people with Marfans - for instance, say that 10% of people have lanky frames, but 90% of people with Marfans have lanky frames (that's not a fact; I'm making it up as an example!). If an otherwise healthy individual began having unexplained cardiovascular prolems, the lanky frame of the person might provide a clue about what's going on to the doctor. It'd be a red flag as one possible condition to look for - but not a definitive basis for diagnosis. There'd still be other conditions the cardiologist would look for - Marfans would just be one of them.

In short, I don't think there's any reason for you to worry about Marfans. I know it can be confusing and down right scary to read about a condition and see that you have a few of the symptoms or charcteristics. But you don't think you have any real health problems, and don't seem to stand out among your peers as one who is sickly, easily injured, or a physical oddity. I'd reccomend that you trust your own ability to listen to your body, instead of worrying about whether or not you might be missing a problem. And to also trust your doctor, coach, and parents to have noticed if there was something serious going on. In the end, both you and they know your body better than an Internet site or a reference book.

Michelle

By tspain on Monday, March 29, 2004 - 04:25 am:

My name is Tonya and my Family is rampant with Marfans. It took 3 family members dying before we received a diagnosis. Why? Because we are not tall and lanky. The medical community was shocked. My family had many of the markers but most of us are of average height and moderate weight. We have known no one outside our family with Marfans. Having someone to talk to would be very welcome. My email tspain04@yahoo.com.