My name is Carly I'm 22 years old I was born in Bryn mawr Pennsylvania, a small town about 20 minutes away from Philadelphia.
I was diagnosed with focal macrodactyly when i was around three years old. I had my first surgery to remove what im going to call my index toe and my middle toes. When i was born they were as long as my foot and fused together, my mom had to fight with the doctors to let me keep my foot. At three i had grown a baseball sized lypoma on my foot and the metatarsals were growing too quickly they were the size of the bones in my mothers foot, so they stunted the growth of one of them and removed the other so i could walk properly as well as removing the tumor.
I had grown more lypomas by the time i was 12 and it was impossible for me to wear shoes at that point so I had another surgery to thin out my foot and remove the two small toes left on my foot because they didn't work anymore.
When i was 13 I got into a bad car accident and I had a cat scan done to make sure I didn't rupture any internal organs, my organs were fine but they found a tumor the size of a ham in my thigh. The tumor had been there for so long that i don't have a ham string in my right leg.
When I was a senior in high-school i had to have surgery to thin out my foot again and re construct the sole, because they had amputated all of my toes except my big toe the bones of my foot wore through the sole of my foot. So they reconstructed my foot and ground my bones down very thinly so they hopefully wont rub through again.
As of February second this year I had a 15 pound tumor removed from my thigh, it almost cost me my leg. It had grown so large that it was constricting my femoral artery and my sciatic nerve so I couldn't walk very much or sit or stand I had to spend a lot of time laying down.
I'm personally very frustrated with whats wrong with me, I can't live a normal life at the moment I can't do the things that I love to do like go hiking or play sports because its dangerous for me and my body won't let me most of the time. The side ways looks i get from people when I use a disability parking tag, or when I say that I can't do something make me really sad. No one knows how hard I try to be self reliant and sufficient, no one understands how hard I push myself everyday. I don't talk about how much pain I'm in, I refuse to take medicine for it, and I still try to do things that are out of my reach. My doctor told me that I should have a desk job if I want a job because I shouldn't stand on my feet all day. I ignored him. I successfully graduated from one of the best culinary schools in the world with an AOS in culinary arts and will soon graduate again with a BPS in food studies. I'm not good at laying down and taking it easy so I spend a lot of my time frustrated.
I've also learned that there are people not as kind as I am in the world. I've had significant others break up with me or tell me to always keep on socks or shoes around them because my foot disgusted them. When i was a child parents told their children if they were to play with me their toes would fall off and they would grow lumps. I've been called club foot, clubby, and elephant leg.
This disease has taught me to be strong, and resilient, and how to have a thick skin. I hope one day that the lympoma growths stop, and I hope that if i am ever to have children I don't pass this onto them. I hope that someone here has had the same struggle so I can finally find someone to relate to and share an experience with, someone to talk to when I'm having a bad day. Please feel free to comment back I'm not gonna bite I Promise!
