Some say that scoliosis is a terrible thing. I know that most times its not something people want to hear and get frightened to think they too may need spinal fusion surgery. I know that being a kid makes everything harder and wearing a brace can be tough and hard to cope with. I know all about this because I went through the same thing. My story is different from that. I am grateful I was hit by all this.

It all started when I was just 7 yrs old. I was in the first grade and developed a weakening in my legs. It wasn't much at first and we just thought that I was playing hard at school or something like that. Things started to slowly get worse over the weeks. I was beginning to get real tired walking to the art room or music room and felt I wasn't able to be a normal kid. I wouldn't go play at recess which got the teachers concerned. It got bad enough that I couldn't walk from the car to the house and simple things like getting dressed and taking a shower became one of the most difficult things to do. I couldn't pick my head off the pillow and all I wanted to do was sleep. My mom started to get concerned about this and took me to the local family doctor. He suggested that I went to the hospital and so we did. We went there and I had bloodwork done hoping they would find the answer to my problems.

Weeks went by and still they had no answer to my ongoing problem that slowly was taking my life away. I had to give more and more blood each week while again and again no answers where found. My mom went and complained to the Dr. I know that it must have been so hard for her to see me lose all my mobility and the dr. couldn't do anything to help. After several ongoing months my mom gave up on them and took me to schotish rite in Atlanta. I do think they saved my life. They were able to diagnose me within a few hours of doing blood work. Right away they wanted to admit me to the hospital and do a number of tests. I was very scared and didn't want this. I was just 7 yrs old going through a traumatizing situation. While in the hospital they did a number of tests to see how my functions were and how much this had effected me already. They did a muscle biopsy on my leg to confirm their diagnoses. I think that was the scariest thing for me. I fought the everything. I think maybe I was too young to realize how this was going to help me in the long run. I had the most amazing doctors to help me. I cant thank them enough. I was diagnosed with dermatomyositis which is covered under the muscular dystrophy association (MDA).

Dermatomyositis is a disease that affects the blood vessels leading to the muscles and skin. My muscles don't normally so I get tired quicker and cant do all the things a normal person can. Doctors don't know what causes this but they think that my kindergarten booster shots may have been the cause that brought it out. This is a rare disease that effects everyone with different severities. I have a mild case and with my meds I can live a pretty normal life.

MDA has changed my life for the better and I can now realize what has happened to me in my life. I go to the MDA clinic at schotish rite every few months for my check-up. In 2001 I had a started to get weaker. Right away the drs. wanted to start me on an IV drug (IVIG). I was put in the hospital so they could monitor my first dose. This is a drug made from some protein in blood. I had to get it at a very slow rate and to much too fast could make me sick. I would not be able to hold anything down and have to take special meds to help with that. I took that for years until I was well enough to quit using it.

While I was in 5th grade I was having pains in my right shin and ankle. Slowly over time I was developing hard bumps on my foot. We thought nothing of them and moved on with life. At my MDA visit we decided the doctor would want to look at them and found out they were baffled by it. They thought it may be a cyst. Unsure of what it could be they figured the best thing may remove it.

My mom was very interested in learning all about my new medical challenges. After much research the doctors, along with my mom, found out they were calcium deposits. With dermatomyositis calcium is slowly pulled out of my bones and put in other places. Removing them would mean they would come back worse. Glad not to have removed them my mom found a new drug on the internet. Not sure about it my doctors did much research and found that it worked in some cases and not in others and that it could form kidney stones. I was willing to do anything so they let me try it. I was becoming a lab rat for them as they would call it. I couldn't wait for it to work. After years of taking the meds my calcium deposits were going away. I am now off the meds and don't have them near as bad.

I was diagnosed with scoliosis shortly after I was diagnosed with Dermatomyositis. What the doctors believe is that with all types of muscular dystrophy our muscles don't work like normal so the muscles around the spine have a hard time holding it up. Our spine starts to bend and twist making it harder for us to do things. This is what happened to me. Most times in an MDA patient the scoliosis is going to get worse so surgery will be done in the early stages so it can be corrected as much as possible. With me it was a little different. I was one of the better patients and they were hoping that my scoliosis wouldn't get bad. Over the years they watched it and after getting to the 20's it leveled off. I was never put into a brace which has always baffled me. I heard that the brace is a very traumatizing thing. Many times kids don't want to wear it and are scared at what other people would think of it. Many times it ends up hurting the patient and never works like thought. I believe that in most cases it slows the speed of curving down but it doesn't cure it and protect you completely.

With me they thought that I was done growing and so was my curve. That was obviously not the case. After years and years of monitoring me an x-ray revealed that my curve had jumped to in the 40's. That is when the doctors kept and extra eye on me. Slowly the curve reached the upper 50's and that is when they realized it was not going to quit. I had to have surgery. I was having lots of back pain and not a day would go by that I wouldn't. To me hearing that I needed surgery was a sigh of relief that maybe I was going to be free from the agonizing pain. The doctors did reassure me that this may not help my pain which I was prepared for.

During this time I had been having trouble breathing and my family just thought it was the scoliosis pressing on my lungs. I had tests done to determine that I did have slight asthma. I was glad to hear that it was something that could be easily treated with an inhaler. That has helped me alot especially when I play my clarinet. I am able to play longer without losing breath as easy.

Surgery was scheduled for March 10th. I wanted to have it early enough that I would feel half decent by my birthday on March 29th. I had to have a homebound teacher and he helped me catch up when school was out then. In total I was in the hospital for about 6 days and out of school for 4 weeks. I never got nervous for the surgery and I think my parents where ready for me to be free of pain. We all knew that I was in great hands with Dr. Shrader. I had a great team working on me that day and one of the miracles was that we found out the guy in charge of monitoring my spine signals his dad lived back my road. We were neighbors. Not very many people are specialized in that field so he has to move all over the south to do this.

I have always been fascinated by the medical field. Maybe it was everything that I have been through but when I grow up I want to work in the hospital helping the NICU babies. My family, friends, and teachers were all very supportive of me. They wanted what was best and I got lots of cards from them and they were willing to help whenever.

The hardest thing about the surgery was not being able to move. I am not allowed to lift a lot or twist. I tried to move soon after surgery but the nurses came over and had to explain to me that I couldn't get up. I think my sense of humor kept me going while in the hospital. I was in my room less than 5 minutes and complained I was bored. Right then my parents knew everything was ok and nothing changed about me. They were the biggest help through the whole ordeal. My parents are the best and I don't know where I would be without them.

What I have gained from being through all this is not just friends but memories and a greater understand for people with things far worse. I go to MDA camp once a year. That is where any kid with MD can go and spend a week just being themselves. Most of them are in wheelchairs so it is a great time for them to be away from the struggles of life. I am lucky to be able to walk and just want everyone to see that just b/c these kids cant walk physically doesn't mean there spirits aren't right there with you walking through the journey of life like everyone else.

Most people look at me and hear my story and think how amazing I am. My parents took pictures of me in the hospital and I have a scrapbook of all the letters I got and pictures and parts of all the balloons. I love to show everyone what I have gone through and let them know that it is ok. Most people think I am one tough girl but I don't think like that. I believe that this is just something that has happened to me and I had to go through it. I don't think that it is a very big deal. Everyone has challenges in their life they have to face and granted they may not be as big but they are things people have to overcome. I am glad to have been through this and wouldn't want it any other way. God had a reason for me and I think it was partly to help me become more caring and also to help the doctors understand and have more evidence and reason to work with. Maybe there will one day be a cure for all MD.

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