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Dawn M: Linear/Systemic Scleroderma

I would just like to know what is really wrong with me. It is debilitating.

I would like a second opinion for my patientHello, my name is Dawn. I am twenty-nine years old, and live in Louisiana. I was diagnosed with linear scleroderma on my lower left leg (calf region), when I was fourteen years old, via biopsy. I also have always had a few vitiligo spots on my body that we were told commonly coexists with scleroderma. They showed no concern over them, so we disregarded them altogether.

My family and I were informed by the doctors, that the localized/linear form of scleroderma that I was diagnosed with, would never progress into the potentially fatal, systemic form. Basically, all that we would be dealing with, would be cosmetic skin issues, and it would probably reverse itself in a few years. No serious complications to be concerned about. So, eventually it did go into remission for about three years and I continued to live out a normal life, got married, and had two children. Everything seemed to be okay.

However, in 2003, during my second pregnancy, I began to have issues. I first had difficulty becoming pregnant (with my first child, born in 1997, my daughter, it was never an issue.) Then, I was later diagnosed with endometriosis in the second trimester of my second pregnancy. The endometriosis resulted in a partial hysterectomy in 2003, at twenty-three years old. After the birth of my second child, my son, I began noticing my leg was swollen and painful— the scleroderma was spreading again!

The scleroderma had only covered about two-thirds of the left calf region at that time. Since 2003, it has progressed remarkably fast! In the previous ten year time period (1993-2003), it only covered about two-thirds of my left calf. In the following five year period, (2003-2008), the scleroderma had progressed to take over the entire left side of my leg and foot. My skin is so tight, that the toes on my left foot no longer flex, which is called sclerodactyly. I hardly even feel my left foot anymore. My left foot now, always, has that numb, asleep feeling.

I have also developed some other symptoms since 2003, such as: chronic fatigue, increasingly-frequent painful flare-up episodes, Raynaud's, sclerodactyly, rheumatoid arthritis, chronic joint/muscular pain/swelling, frequent edema flare-ups throughout my entire body, dysphagia, anemia, esophageal dysmotility, autoimmune hair loss (alopecia), Gottron Pappules, depression, fibrosis, dermatomyositis, hypothyroidism, vasculitis, muscle atrophy, and spontaneous rash breakouts, are just some of the symptoms that I can think of right now. The scleroderma has ravaged, consumed and taken over so much of my body and life so fast!

To make matters even worse, I have also developed a brand new lesion of scleroderma. It is also located on the left side of my body, on my face, in the center of my cheek! Even though it is only visible on certain areas of my body, given all of the symptoms that I just mentioned above, and the fact that it is clearly visible on my leg and face, it is now actually, from one end of the body to the other.

I think that I may possibly have Overlap Syndrome or even Systemic Scleroderma. I'm not really sure. I haven't been able to get any of the proper required tests for an accurate updated diagnosis. So all I can do right now is guess. Which causes me to wonder and stress, something that I shouldn't be doing right now. Stress enables the progression of scleroderma.

I am also getting a divorce from my husband this coming year. I am a twenty-nine-year-old, soon-to-be divorced, single mother of two!

I have been to several rheumatologists throughout the fifteen year duration of my disease, but in the last couple of years, I have not had access to the proper health care that I should have. I have tried to do what I could, but with limited finances, like I have, it is not easy. I have no health insurance anymore, and I have applied for Medicaid, SSI, Disability, and child support. No longer being able to work, with an eleven-year-old daughter, and a five-year-old son to raise on my own, has been extremely difficult to handle. While my applications for the assistance's are being processed by the government (no one ever really knows how long that could take), I am having problems maintaining my bills. My flare-up episodes are becoming increasingly painful, more so than ever before! Each episode increases in severity, which, honestly, has me really scared.

That is why I am writing my story down like this, I am at a pretty desperate point. I have tried for fifteen years to find a good, resourceful, affordable, rheumatologist to help me with my disease. Not only are good doctors hard to find, but the in the field of rheumatology, being the rare field that it is, they are even harder to find.

I really would like to try to enjoy living my life! I don't like being unhappy, and depressed. Being preoccupied and worried, knowing that I may have a potentially, life threatening, form of the disease, but cannot know the answer. I have made so many pointless attempts, trying to find help with this disease. I would just like to know what is really wrong with me. It is debilitating.

Thank you, so very much, for taking the time to read through this e-mail. I will win my fight against scleroderma.

Wishing you all Love, Hope and Faith.

To Contact the Author

Dawn M.
Email: [email protected]
Story edited 03-07-09 JTD
Story posted 03-25-09 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Thompson Devlin
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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!

Go to Dawn S: CREST Syndrome

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