Hi! My name is Kim and I am 30 years old. I am also VERY excited about becoming a member of the "Bumpy Bone Club." I was seven years old when a friend of my mother's noticed a "bump" on my right ankle. The doctors told my mother that I had "Multiple Osteochondroma"
(also known as HME). The story goes that my mother cried and I did too. However, it wasn't because of the diagnosis (I didn't understand that that time). I cried because I didn't want to have to ride with my mother in the car on the highway! Even then she scared me!
I had several operations. The "biggest" one was on my knees. I had a lot of tumors removed at one time off of both of my knees. It was the summer before I entered high school. The tumors were close to the growth plates and my doctor wanted to wait until I stopped growing. That was also the summer that my parents bought an above-ground pool. I was able to "walk" in the water. Needless to say, I spent much of that summer in our new pool.
My parents were very supportive. They let me try whatever interested me. I was able to be on the drill team, took dance classes, and did other "teen-age" activities. The most difficult problem that I encountered was my scars. I loved fall and winter. I lived in pants. The "looks" would upset me. My mother would comfort me. We would make up stories that I could use to explain my scars. I like the skydiving story the best...it went like this... "I was traveling with my family in Colorado and decided to skydive. I was having so much fun that I didn't realize it was time to focus on the landing, thus landing with a thud! I had to have my knees repaired as a result." Maybe you can fantasize like I did and come up with a better story. However, I must say that I would tell people all they needed to know...I had my knees fixed...and left it at that.
Now I'm an adult dealing with HME. I'm still learning about this disease, like you. I still get "looks" but I realize that people aren't looking to be mean but out of curiosity. My scars give me something to talk about that others don't have any idea about. So I don't worry about that anymore. Instead, I want people to know that I have HME, but it does not have me! There might be some things that I have wanted to do but couldn't because of my bumps. However, I can be creative and get around HME. For example, I would swim a lot growing up because it wasn't painful. I had a hard time sitting on the floor after one of my operations, but I stretched and was soon able to sit on the floor in front of the tv with my legs crossed (I know this might not be good for for everyone, so check with your doctor or physical therapist first!). If something is hard for me, I tend to work on it until it becomes easier. At age 29 I had an operation. One month later I was able to carry my son. I know that I do not have a severe case of HME. I have been fortunate. My oldest son, who will be six in July, has a more severe case and will have to have some bone lengthening done on his left arm when he is a teen-ager. BUT - I want and hope to help him understand that HME can be thought of as an inconvenience. It does not have to be him!
I also think that life has many difficulties..one of mine has a name. HME. When I first met my husband, I was discussing the possibility of plastic surgery on my knees to help with the scars. His comment was that everyone has scars. Better "outside" than "inside"! I agree. I wish that I didn't have this disease, but I do and have learned to live with it. I hope and pray God gives me the wisdom and understanding I will need so that my kids, Travis and Trevor, will know that HME doesn't have to "have them." They don't understand what they have inherited from me yet, but when they do...they'll have the "Bumpy Bone Club", too.
I hope that my feelings about HME will help others see this bone disorder in a different light. I know there are people who have had more problems because of their bumps. However, I believe that HME or not, God loves us and has a purpose for us all. I believe that He made me the way he did for a reason. I thank him for that.
If you have any comments or would just like to email me, please do. I love to hear from others who have this inconvenience!
Have a great day...