Growing Up with Bone Bumps
By Elizabeth Munroz

My mom, brothers, sister and me (in green dress)

I remember when I was little. I was playing on the floor.  My Mom walked by and I noticed a big lump on her leg by her knee.  I was curious.  I had not noticed it before. Without thinking, I reached out and touched it.  She jumped. I had startled her.

"Mommy," I asked. "What happened to you?"  Then, I saw the look on her face. Had I done something wrong? I didn't understand. Then, she told me. When she was a little girl she got teased for being different.  She felt awful about it. When she was a little girl, people hid things about themselves that were different. She grew up feeling embarrassed about the bone bumps on her legs, the different way she walked, and the strange curve of her arm. When people asked her about her arm, she made up a story and said she fell off a horse. She didn't like to say that, but she really didn't know what else to say. Back then, nobody knew what the bone bumps were. Because she didn't understand what they were, she didn't feel good about herself.

So, when I asked about her leg, all those things came to her mind. Then, she sat down with me and explained my big brother had it, too. When she took him to a doctor, he told her it was an inherited condition. That's why my brother had it, too. I was surprised. I had never noticed any bumps on my big brother.

When Davy came home from school that day, I asked him about it. Then he pulled up his pant leg and showed me the bump on his leg. It was a lot like my Mom's but it was above his knee. "I never knew about your bump, Davy." I said.  "Does it hurt?"

"You never noticed because I always wear long pants and long-sleeve shirts. Most people don't know about my bone bumps. I don't want other kids to think I'm different," he said. Then he looked thoughtful for a moment. "You are lucky you don't have any. I've got lots of them. Most of the time they don't hurt. But, one time I fell and bumped one real  hard and it hurt a lot!"

After that, I felt all over my body just to check and make sure that I really didn't have any bumps. But, when I felt above my knee, I thought I could feel one. I went to my mother and told her. She looked at my leg. "No honey, you don't have any bone bumps. Don't worry>"

Then, my little brother, Roger, got born. I was so excited to see the new little baby. I couldn't stay away from his bassinette. I just had to look at him. Then, I noticed there was a big bump under his knee. It was the same size as his knee.  "Mommy! Why does the baby have three knees?" I asked.  My big brother heard me and answered before Mom could say a word. "That's not another knee, you silly" Davy said.  "That's one of those bone bumps like me and Mommy have." For a long time after that I thought I was adopted because I didn't inherit any bumps.  Then, my little sister, Deanna got born. I looked carefully at her. She didn't have a single bone bump on her. Only thing different about her was that one of her thumbs looked a little wider across the fingernail than most thumbs do.

My mother didn't want us to feel as bad as she did about the bumps, but sometimes other people can be cruel if they think you might have something about you that they can tease you about. I remember a girl in my kindergarten class who was teased because she had freckles. One time when I was at the playground with my little brother and sister, some kids started picking on my little brother. It was a hot summer day and everyone was wearing shorts. Somebody noticed Roger's bone bump that looked like an extra knee. They started picking on him. I knew his feelings were hurt. We went home and he changed clothes. He always wore long pants and shirts after that, no matter how hot it was.

By this time I noticed that the bump above my knee was bigger than it used to be. I tried to tell my big brother, and my Mom, but because it wasn't as noticeable as everyone else's, nobody thought I had a bone bump. Then, I went roller-skating with some friends. I was pretty good at roller-skating and some other sports, but I never could run as fast as other kids and it took me forever to get my legs to work right in order to learn to ride a bike.

At the roller rink we were getting pretty wild. We were hanging on to each other making a game called "the whip". I was near the end of the whip and I couldn't keep up with everybody else. Suddenly I fell and landed right on my knee. It hurt so much, I couldn't really get up and walk very well. My Dad came to get me and took me to the emergency room. He thought maybe I had a broken leg. Imagine everyone's surprise when the x-ray showed that I had several small bone bumps around my knee area. Two of them were larger, the one I had felt for years and the one that I landed on. This was when I learned from the doctor that they weren't called bone bumps. They were called exostoses, which means "something outside of the bone." This is also when I learned that sometimes they are called osteochondromas, which means "cartilage tumors that grow on bones".  The doctor told me not to be scared. Just because they are called tumors does not mean that they are cancer. These are benign tumors. Anyhow, I had to stay home from school until I could walk again. I hated missing school, and I loved missing school. I hated it because I missed my friends and all the fun they were having without me. I loved it because I got to stay home, and lay on the couch watching television and having my mom treat me special. When I was well enough to walk better, I went back to school. But there were a lot of stairs and I was limping badly by the end of the day. My girlfriend, Karen, carried my bookpack for me. We both were embarrassed at how I looked as I limped.  Other kids stared at me. I wanted to cry. A few weeks later, I was much better.

My little brother has a lot of exostoses on his knees and they bothered him a lot. If he bent his leg in a certain position, like when you climb stairs, it would lock in that bent position for a while. So, Mom took him to the doctor. Roger had  a couple of surgeries to remove a lot of those tumors in his legs. He also had some in his arms removed. He got some really big red scars on his legs from the operations. That scared me. Even though I wished I could get the exostoses removed from my legs, I thought I wouldn't want to have such big, ugly scars. After all, my bumps weren't as noticeable to other people as my brother's were.

My big brother didn't want to have surgery either. Then, one day, when he grew up, he decided he wanted to join the army. But, after they saw the bumps they wouldn't let him join the army. I was afraid if he went into the army he might get in a war and get killed, so I as secretly glad that the exostoses kept him out! Dave felt bad about it. He decided he was going to be a muscle man. He did lots of exercises and lifted weights. Pretty soon he looked like Arnold Schwartzenegger. Sometimes the exostoses would ache a lot from all that, so he rubbed liniment on himself a lot. It smelled very minty. I began to use it, too. Sometimes it felt like the muscles around the bumps were aching when I did something too strenuous. Even if I did a lot of writing or drawing, my fingers and wrists would hurt. As I got older, I couldn't participate in sports anymore and had to be excused from P.E. classes with a doctor's note. But I didn't get excused from swim class. That was the best thing for me. I always felt better after being in the water.

When I got older I went to see a very important bone doctor who was know to specialize in bone tumors. He was in a big city far from where we lived. He asked if other people in my family had these bone tumors, too. I told him yes. He then told me that the condition is called Multiple Hereditary Exostoses. He showed me some medical books and let me read about MHE. He said that he was doing a big medical research project and he wanted to know if all my family would come in to have x-rays and tests. I told him that just my mom, my two brothers, and me had the exostoses, not my little sister. But, he said he wanted to test my sister too. He told me sometimes a person will have it and not get diagnosed because it isn't obvious. so, after he did all the x-rays and tests on everybody he told us that my sister had it too! We could hardly believe it. Among all us kids, she never had any  problems with walking, running, riding a bike or having her leg getting locked into one position. She never had pain and soreness that needed liniment. She wasn't knock-kneed like my mother and me. She never limped or walked funny. She could sit with her legs folded under her, Indian-style. Amazing to us all, she could even pull her leg up and put her foot behind her ear!! But the Doctor had discovered that Deanna had little, barely noticeable tumors on her rib and her scapula. (I call it the angel-wing bone). He also pointed out that Deanna's thumb was a sign, as well as her short, thick-boned legs.

Now all of us are grown up and have kids of our own. Dave's daughter did not inherit the MHE condition. I got to be a mommy with a daughter and a son who have it. I sat through some operations that my son had. I am glad he got to have them. He is much taller than those of us who have not had surgeries. He can get around a lot better too. My sister had a son and a daughter. I t looked like her kids did not have MHE, but we were in for another surprise. Her daughter had to have surgery to have a bump removed!

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