Although at ten I was finally able to see on my own it was also the first time I started experiencing pain because of my disorder -though at the time we didn't know the culprit- because like I said before, we were told I didn't have Marfan Syndrome, and that was that.
My foot started to ache fairly bad every time I'd take the pressure off of it, so pretty much every time I moved, so to speak. Most people seemed to think I was faking it because there was nothing there. Tests were performed (CT scan, ultrasound), both came back clean but the pain was still there and getting worse. This would continually get worse for the next 3 years with still no explanation, until finally when I turned 13 a lump began to form on the exact spot that was causing me pain. A ganglion cyst. This is a cyst (swelling) located on top of a joint or the covering of a tendon that is filled with clear thick fluid. Ganglion cysts are prominent in the general population but those with connective tissue diseases are more likely to get them. It is also uncommon to get them at such a young age. To this day I still have the ganglion. It is 2 inches long and sometimes raised as high as an inch. The pain in my foot isn't as bad anymore but now it has begun to hurt further up into my ankle. I was told treatment would be pointless as it would most likely come back eventually.
At 10 years old I also started experiencing chest discomfort. It is a heaviness, as if someone is sitting on my chest. I was tested for asthma and have had a chest x-ray, EKG, and halter monitor but nothing has showed up that would cause this. Even seven years later I still experience it 24/7 and don't know what it is. I am so used to it now that I barely notice it anymore, although smoke of any kind and really cold air both seem to make it worse. We haven't had it investigated much since I was 10 and everything looked fine. It isn't life altering or painful and so I have learned to live with it.
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