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Alicia B: Localized Morphea with possible Parry Romberg Syndrome

I have had many people argue with me and tell me that I was in need of a good face washing!

Pink Hibiscus by Sherrill Knaggs, ISN Artist I was diagnosed with morphea when I was in the seventh grade. It started with what appeared to be a bruise on my chin. I ignored it, thinking I hit my head on my bed or something.

About three months later my mom asked me what is was. I told her I wasn't sure. So we went to the doctor I had seen for many years He said that he wasn't sure what it was and he wanted to call someone else to come in and look.

Anyway about seven regular doctors later, no one had any idea and I was finally told to go see a dermatologist. So I went to a few dermatologists who wanted me to go to this large convention thing because no one knew what it was. After being poked and prodded at for two whole days, one of the doctors comes up to me and says, "Well, if we had to guess we would think it would be morphea."

Not knowing much about morphea, I went back to one of the dermatologists that I liked and asked her about it. She told me it was an autoimmune disorder and that it would spread in a linear motion and because I got it on my chin under my lip, it would have to go around it but that could take months or years.

By this time it was not just a bruise anymore. It was a circular indentation on my chin. The doctor kept saying something had eaten away at all the fatty tissue and the muscles which left it just skin, blood, bone, and nerve so when you look at it, it looks like I have dirt on my face and a gaping hole to go with it.

By this time, people started to notice it a lot. More people would come up and say I had pencil lead on my face. (Do you know how hard it is to convince them you do not?) I have had many people argue with me and tell me that I was in need of a good face washing! I was young and all I knew was this thing on my chin is ugly and no one knows if it will ever go away and people think I do not take showers or wash my face! I could not convince them otherwise.

I started having major issues with self-esteem. I did not go out much because at the time I did not know what to tell these people because I did not even know really what I had. Everything we would look at on the internet would describe it as being a hardening of the skin and a brown coloring sometimes causing a raised bump. I do not have that. The skin has more elasticity then anywhere else on my body. There is no hardness and the skin itself is not colored. I just have no fat cells underneath to hide the blood, which causes it in turn to be slightly discolored.

So needless to say my doctor tried a few things like prednisone and plaquenil. She started asking about my family's medical history. My grandmother had an autoimmune disorder (my mom cannot remember which one) and my aunt has lupus, another autoimmune disorder. So from what we could determine it was running in the first born daughter of every generation, but every doctor I saw denied a connection between it all. They ran several tests to try to determine whether or not I had lupus due to these two diseases being so similar. From what I understand, there is no specific test for lupus. They run a series of tests and if some of those tests come back positive they diagnose you. They said I was one test short of being diagnosed. My mom panicked as she knew that lupus is deadly and my aunt struggles real bad with it. When she asked the doctor, the doctor said that there was a very strong likelihood that I would get it also.

Later on after taking all this medication that made me so sick and was not making a difference, the doctor said, "Alicia, There isn't anything else we can do. We are sorry! It is going to have to run its course and we are worried that eventually it will attack your organs and could create complications."

By this time I was in the eighth grade and crushed because all that means to me is eventually you might die. I could not handle the stress. I gave up. If it was going to do it anyway, why fight it. So I did not see another doctor for about two years. I started to notice it was spreading so I went to a small town doctor who sent me to a large medical university.

So I had an appointment with one of the best dermatologists there. He wanted to do some more biopsies, run some more tests, and try collagen therapy, thinking he can buy me some time by putting some more fat, for whatever it was to eat through, to hopefully stop it from spreading. After seeing him for awhile, nothing was working. Again they told me, "We are sorry."

I tried to go on with my life, knowing I could not change it and people are going to ask and be rude because people do not know what to say. I have heard just about everything from car accident, birth defect, dog bite, surgery, I got in a fight, and I have something on my face. I got tired of arguing with them or trying to justify it, so I did not leave my house.

Finally, I got more comfortable with it. I guess I just forgot it was there, and went back to work. People asked occasionally and I told them. I know when it starts to spread because more people start asking me about it. What bothers me the most is when I was at work one day and two girls were talking about me but they could not see me nor did they know my name, one tried to describe to other one who I was, and the way she said it was, "It looks like a dog took a big chunk out of her face." They did not refer to me as the tall blonde chic or anything; they referred to me by my face. It took everything I had not to say anything to them. When I came home that night, my boyfriend knew something was wrong. I ignored him.

The next morning I called around to find out who the best dermatologist was in my area. I made an appointment, and he walked into the room and said, "Nice case of morphea." (I was still not convinced it was morphea.) He told me he wanted to put me on a prescription cream for eczema. I laughed. He started feeling my chin and noticed that it is also eating away at my jaw bone. He said, "That is going to be a problem someday." But it was nothing he wanted to do anything about. Then he said, "We are sorry." I hope I never hear those words ever again.

I never wanted to have children because we could not rule out that I would not give this to them. I had a doctor agree with me and give me an option for a hysterectomy, and I agreed. Well, before I went in for the surgery they determined I was pregnant! Nine months later I had a beautiful baby girl! But now I am scared to death because she is the first born daughter of my generation and she is very likely to get it.

I contacted a scleroderma organization and they referred me to some guy in Seattle and told me about this new surgery option, so I am going to Seattle on March 24th to find out if there is any hope.

This disease affects everything I do. I have hip problems because of it. If I catch a small cold or just the sniffles, I get really really sick and it stays for a couple of months. They say my body does not fight off anything but itself. If my daughter were ever to need an organ donated to her (we both have a rare blood type) I could not help her because my organ would reject her body. My mental view on this is "Why me?" They have convinced me that I will not live as long as everyone else. I hate them saying "We are sorry." Just help me. Do not tell me you are sorry. I cannot take it anymore. I just need help.

This surgery which might be my only option is very expensive and I am not sure if my insurance will cover it. Probably not. So if anyone has any information of any kind, about good doctors or anything, please let me know.

To Contact the Author

Email: [email protected]
Story edited 03-10-05
Story posted 03-10-05 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
Juvenile Scleroderma
Parry Romberg Syndrome PDF Brochure: What is Scleroderma?

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill KnaggsSherrill Knaggs, ISN Artist, created the digital photo to illustrate the story on this page. Sherrill lived in New Zealand. Her story was featured in ISN's book, Voices of Scleroderma Volume 2.

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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