Jeni's Story
MHE and Me
I am who I am and nothing can change that.  People think I'm different. Now, I say so what. There's a lot more to me than MHE.

Along with MHE, I have Madeline's Deformity. My wrists and elbows are slowly sliding out of place and limit my motion.  Only a small percentage of people with MHE get this. MHE is around my immediate family. My mom started it and when she was born the doctors didn't know much about it and said that she would die within a year. Obviously she didn't. As for surgeries, I'm lucky. I haven't had as many as some people. I've only had two for MHE. One surgery where they took three out of my knee, and one where they fixed my tendons and took out several from my hands and fingers from both hands.

At school, most of the time, I'm just like everyone else. I get A's, B's, and okay, I get a few C's once in a while. I love to read, though. I read what interests me, and you'd be surprised, that's a lot.  I'm 13 and in August I'll be 14. I live in Houston, Texas.    There's not a whole lot to do here, but it's all right. Anyways, when people meet me, I'm like a normal person, but when they take a closer look at my arms and hands (which are the worst for me), they all ask questions like "What did you do?" and "What's wrong with you?"  I used to ignore them, or I would say nothing important. Now, I'm okay to say what's wrong, or simply "I was born that way."

Really, I'm like any other teen. I like to hang out with all my friends, I like to shop, I talk on the phone a lot, and I listen to music. Mostly pop/rock. I watch a lot of movies, but my mind isn't quite made up about which is my favorite. I'm also very touchy about my hair. It's curly and gets kind of frizzy sometimes. I also do a lot activity wise. I do a lot of things, but here are a few: I play the cello, which my orthopedic doctor says I shouldn't really be able to do. I took dance for a year and a half before my hand surgery last year. I was in student council in 8th grade, and I volunteer at a local animal shelter called Noah's Ark.

Sure, MHE limits my activity a lot. Nobody's activity isn't limited from this. I don't get easily frustrated from what I can't do, only when people expect me to do those things all the time. I can't do things such as running (which really didn't help when I took gym), sitting with my legs crossed, I have to write different, I'm not very good at typing, my legs don't really bend a lot, and I can't pull my arms all the way straight. I do what I can, and I even try, though unsuccessfully, to do the things I can't.

MHE is just a small part of me. Everything is so much bigger. I am who I am.

If you would like to contact me, email me at