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Mary-Charlotte: Juvenile Linear Scleroderma Patient

I am fourteen years old and I have been in remission for about six years.

Starry-eyed Flowers for Mary-Charlotte by Shelley Ensz When I was five years old, I closed my finger in a lazy susan, and a small brown spot appeared on my index finger. We all assumed that it was a bruise, as we had no reason to think otherwise. After a couple of weeks, the bruise was not going away, and my entire pointer finger was beginning to look slightly discolored. My parents took me to our pediatrician, and he took X rays and decided that it was just an infection. I took antibiotics for a couple of weeks, and nothing changed.

I was then taken to a pediatric surgeon, who had no idea what the problem was. He recommended that we go see a dermatologist at Yale. Upon my visit with this dermatologist, I was diagnosed with morphea. At that time, no treatment was prescribed or recommended, as Morphea usually resolves itself after a couple of years.

For a second opinion, I was taken to a doctor in New York City. This doctor thought that a very different approach should be taken to control the disease. He prescribed IV methotrexate, and steroids. My parents immediately decided against this treatment.

By this time, the brown markings had begun spreading down to my hand and thumb, and onto my arm. After about a year and a half, the disease had spread to my shoulder and upper back, causing much muscle loss and discoloration. In some of the lesions, my skin was getting thicker and harder, while others stayed fairly soft. Although I can not remember exactly which doctor, of all the uncountable number of doctors that I had seen by this time, I had now been diagnosed with Juvenile Scleroderma, linear rather than morphea.

After visiting many doctors and having many tests in New York City, Pittsburgh, Connecticut, and New Jersey, I was taken to Boston to see a pediatric rheumatologist. While there, I had many tests that ended up being very helpful to the doctor. I first had an MRI, which was very difficult for me, as I was so afraid. In the end, the doctors had to anesthetize me in order to do the MRI. I also took a swallowing test, and a breathing test, as well as photographs, X rays, measurements, and blood work.

The doctor in Boston prescribed methotrexate. While the scleroderma did not ever make me ill, the methotrexate had very negative side affects. I was thin, pale and sickly. To reduce the side affects, I was given the medication through an injection once a week. While on the methotrexate, I also had to have blood tests each week. This was when I was five to eight years old, and I had grown very afraid of needles, or being stuck by anything. I had a fear of all insects, because I thought that every bug was going to sting me.

When the spread of the scleroderma slowed, I began only taking methotrexate when the doctors suspected that it was active. If my arm was red or at all swollen, I was immediately put back on the methotrexate. At this point, I had begun seeing a doctor at the Hospital for Special Surgery in New York City. I was going to the hospital every week for occupational therapy, and every few weeks I also saw the doctor.

By this time I was in third grade, and although there is very much that I do not remember about my experience with scleroderma, there are several memories that stay in my mind. While going back and forth to hospitals, I became very scared of sick people, and people in wheelchairs. Today I feel like this was very ironic, but when I was younger, I was afraid that I would become like those sick people. I also grew very afraid of having surgery, especially when I began seeing the pediatric rheumatologist at the Hospital for Special Surgery. My mother says that she was happy that this was my main fear, because the doctors knew that surgery would not help cure the disease.

Having Linear Scleroderma was difficult because even when I felt healthy and normal, I had large brown marks on my skin that separated me from other children. The number of questions that I was asked, and that I am still asked today, hurt me in a way that none of my peers could understand. I had many stories about what the brown marks on my arm were, and none of them involved me being sick in any way. Sometimes it was a scar, and sometimes just dirt from recess. These stories caused a problem when I had to miss school every week. Suddenly I realized that I could not tell people that I had to miss school because of the dirt on my arm.

I began telling some people the truth, but being young, and having immature friends, I got a lot of negative reactions. Some people thought that scleroderma was contagious, and did not want to go near me. Other people treated me like I was dying. I did not want to be treated any differently, but some people could not understand that, and some people still do not understand that today.

I am now fourteen years old, and I have been in remission for about six years. I no longer take methotrexate or occupational therapy. I should probably still be taking occupational therapy, but I never seem to be able to continue it for very long, because none of the physical therapists understand that scleroderma is an ongoing problem, and I am not a patient who will ever be done with treatments.

Exercising at home is very important, because I need to retain what little muscle and flexibility I still have in my arm, shoulder, and hand. I now see a doctor who is close to our house. She is a pediatric rheumatologist, and she normally just takes measurements of my arm, and gives me a blood test to make sure that every thing is okay. We are no longer in search of a perfect doctor, because it seems with every doctor we see, we end up explaining what Linear Scleroderma is. We still hope that one day a new treatment will become available to scleroderma patients.

I enjoy horseback riding, and my family and I run a stable in our town. I do not play other sports, but I do not think I can really blame that on the Linear Scleroderma. My left side is significantly weaker than my right side, but throughout my life, I have learned to compensate for that in different ways. Although I am sure that I will never grow up to be a mountain climber, my life is not greatly affected by this weakness. I also love art, and playing the clarinet.

While I am older now, and no longer have to deal with people who think that scleroderma is contagious, the brown marks on my arm still bother me sometimes. When asked what happened to my arm, I normally just tell people it is a birthmark, until I feel that I can trust them to react the right way.

I still enjoy the comfort of wearing long sleeves in the winter, and feeling like I am just like everyone else, even though the marks on my arm have become a part of who I am today.

Up to this point in my life, I have yet to meet or speak to anyone who has scleroderma. I have recently found web sites about scleroderma, that make it their goal to connect scleroderma patients across the world. I pray for everyone who is faced with scleroderma, and hope that soon there will be a cure for this rare disease.

~ Update 03-15-04 ~

Much has changed since I last posted my story on this web site. Scleroderma has proven once again that it is an unpredictable and often uncontrollable force in our lives. My years of remission left me feeling completely positive that scleroderma was (nearly) out of my life for good. While there were still doctor appointments, routine blood work, some physical therapy, and questions from curious peers, it was no longer active, and this made all the difference.

It amazes me how quickly one can adapt to a change, so long as it is for the better. While I was in remission, I forgot what it was like to be actively treating an incurable disease. I forgot what it was to feel sick and drained. I forgot, for a time, what it was to feel different.

Throughout my freshman year of high school it seemed that my health was deteriorating. I felt very weak and often developed colds and other sicknesses. Every doctor I had ever been to denied the idea that scleroderma in its active state causes illness, so I just went on with my life, assuming it was just allergies.

In mid-August, the summer before my sophomore year, routine blood work revealed abnormalities. My SED rate was above the normal level. This was also the case when I was younger and the disease entered an active state. I was very worried about these results, although everyone assured me that it was a mistake. I was always told that once scleroderma was in remission for many years, it would not come back.

A week before my first day of school, my rheumatologist gave me the news that the disease was active again. I was told to start taking prednisone and methotrexate. This was one of the scariest times of my life. Everything happened so quickly. One day I was just a normal fifteen-year-old, then all of the sudden I was sick.

The earliest days of this treatment were the most difficult. Adjusting to the steroids was not an easy task. I was left feeling sick and weak. The first week of methotrexate was not very difficult, but by the second dose it began making me very ill. School began, and keeping up with my work became my goal. Every day was a struggle.

Months passed and I slowly grew more used to taking the medicine. Unfortunately, the dose of methotrexate did not seem to have a strong enough effect on the disease. At this point I stopped taking pills and started being injected with the methotrexate.

It is now March and I am trying to wean myself off of steroids. It is a very difficult process, and has made me feel sick, but it is worth it. Being off of prednisone will be a huge hurdle in fighting scleroderma.

While there is no definite end to the process of stopping the spread and activity of scleroderma, I continue to hope and pray that the medicine will do its job, and my life will return to normal as quickly as it changed initially. Each day it gets a little bit easier. With the help of my friends and doctors, I know we can eventually beat this for good.

To Contact the Author

Email: [email protected]
Story edited 10-30-02
Story posted 11-4-02
Story update posted 3-25-04 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Juvenile Scleroderma

ISN Story Editor: Judith Thompson Devlin

Photo of JudithJudith Thompson Devlin is the ISN Story Editor for this story. She is also lead editor of the ISN's wonderful Voices of Scleroderma book series!

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