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. Finally it was diagnosed as 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.