it sounds like you probably have Marfans. I would not worry about it too much though! the only problem with people with Marfans is heart problems, and as long as you're monitered regually and go to the doctor if you feel like youre having a problem, you should be fine.
don't worry about being tall! beauty is on the inside, not the outside! =]
Alright first of all stop with the freak stuff. You are simply 13 and normally freaking out about what 13yo freak out about. This is something you need to discuss with your folks. What you are experiencing could be nothing or something but you need to have genetic testing to really know. But what concerns me most is that you are carrying this around by yourself. If you can't talk to your parents you need to go to school and talk to a teacher whom you trust or a counselor. Get this out in the open sweety and get it out of your worry zone. And also stretch marks can often be from normal growth which occurs to EVERY 13yo. Talk it over please kiddo you will feel better.
I understand being freaked out by it, since there is a family history and your doctor has mentioned it a few times. I have Marfan, and there are some things you should know first.
1) Marfan is what is called an autosomal dominant disorder. This means that it's caused by a single gene mutation and if you have that gene mutation, you have Marfan, and you have a 50/50 chance of passing it on to any future children. If you do not have the mutation, you can't have Marfan and you can NOT pass it on. This means if your grandfather didn't have Marfan, the chances of you randomly having a different mutation are almost impossible! If he did have Marfan, then your parent would also have to have it in order for you to get it. Marfan can NOT skip generations or slide about the gene pool. So, that right there should make you feel a bit better :-)
2) If you DO have Marfan, you're not a genetic freak. Look, I know it might feel that way, but it's not true. People with Marfan are beautiful! Models try to look like us: tall and thin. I am married now, with one son and I'm pregnant again. I have Marfan, but that doesn't mean I let life stop me. Pretty much all my adult friends with Marfan are married! I work with the teens through the National Marfan Foundation and it was only a few years ago that I myself was a teen. Believe me: you'll find plenty of guys who will see you as attractive and many of us can have biological children (but pregnancy is another conversation entirely).
So, this is what you should do. If you haven't already, talk to your parents and doctor about it. Because your doctor has already mentioned it before, you really should be checked out. You need a look at your full aorta (using an echocardiogram, MRI, CT, or TEE...NOT an EKG or x-ray!), a full eye exam including a slit lamp test and the tests for glaucoma and cataracts, measurements of your body taken, and a meeting with a geneticist. A genetic test is available (the FBN1 test), but it should only be done for those who already meet much of the clinical criteria for Marfan. This is because there are over 600 mutations that cause Marfan...most families have their own unique mutation. So, without a major reason to suspect Marfan already, researchers can't be sure if a mutation they find is a Marfan-causing one or a harmless mutation. (Everyone has TONS of harmless mutations throughout their genetic code.)
Treatments include medication to keep the blood pressure low, avoiding certain activities, and occasionally surgery.
I know this can be confusing, but I'm putting some links in the source section that you should read (diagnosis, treatment, etc.). The Internet is full of info, but stick to the National Marfan Foundation's website so you know what you're getting is accurate. ALSO, there is a listing of hospitals that specialize in diagnosing Marfan. You might want to look into going to one of these for your evaluation. Email Amy Kaplan, RN, at the National Marfan Foundation and she will send you the clinic list: akaplan@marfan.org.
Good luck :-)
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