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Anna: Linear Scleroderma

How does a young girl feel, looking at the long-term changes resulting from the disease with which she has just been diagnosed?

My story started nine years ago. On August 11, 1993, at the age of eighteen, I was admitted to the hospital because of arthritis in my big joints, which had developed over the prior six months. Based on the clinical picture as well as on some investigations, a diagnosis of juvenile rheumatoid arthritis (JRA) was made.

I was transferred to the rheumatology ward for further investigation and specialist treatment because I was seriously ill. On clinical examination, I was pale, my heart rate was high and my liver was enlarged. There was joint contraction at my elbows, limited movement in my shoulders and knees, and pain and functional limitation in my wrists and metatarsal joints. An erythrocyte sedimentation rate (ESR) test revealed increased inflammation, anemia, reduced iron levels, and erythrocytes in my urine. Immunological investigations showed the presence of LE cells as well as a high antinuclear antibody (ANA) titer. These findings led to a diagnosis of systemic lupus erythematosus (SLE).

During my stay in the hospital, I was found to have altered microcirculation with livedo reticularis as well as tight skin on my right lower limb, in particular, the dorsolateral part of my right foot. These abnormalities suggested another diagnosis: mixed connective tissue disease (MCTD). After three months of hospital care, I was generally well and was discharged with a specific treatment including steroids. I was advised to return for regular follow-ups at the rheumatology clinic.

This was the beginning of the difficulties in fully diagnosing my disease. At that time, I did not realize the severity of these diseases and where they can lead. I continued my existence, took my medication, and, at the same time, I was a witness to how one of these diseases was taking my father away. The disease was destroying him slowly, as it involved his heart. Then one day he fell asleep and never woke up. His death was a horrible shock. I became an orphan, together with my brothers, including one who lived abroad. We had already lost our mother when we were small.

Five months later, the skin started to tighten over my right leg and arm. This prompted me to seek help at the hospital where I had been previously treated. Another diagnosis was made: an overlap syndrome of SLE and scleroderma.

After a month, as some specialist tests were unavailable in order to confirm the diagnosis, I was transferred to the dermatology clinic. The diagnosis this time was localized linear scleroderma and rheumatoid arthritis. At this point, I wanted to know more about scleroderma. I suspected that it was a severe disease, and I wanted to understand it. In the hospital, I met three patients with scleroderma. They looked like mummies. One of them had short fingers and tight skin over her face, and it seemed to me that even pronouncing words caused her pain. I was very afraid that I was watching myself in the future and that this was what I should expect.

How does a young girl feel, looking at the long-term changes resulting from the disease with which she has just been diagnosed? Well, I felt very much afraid of dying, of dying too early, and of great suffering. I felt resentful that it had happened to me. All my plans for the future were black. I closed myself down and waited for what would happen next. I am not quite able to describe what I was really feeling, but I know that anyone who has not had this experience will not entirely understand what the patient is feeling.

In the hospital, one of the patients loaned me a book about scleroderma. After reading that book, I could not believe this was happening to me. I asked myself why, but I could not find an answer. I only knew that linear scleroderma is not so dangerous, that it involves the skin, but not the internal organs, and that it can only make a person handicapped. Actually, I was not quite sure which form I was really suffering from and, therefore, I was hoping to have the less severe disease. The doctors were still uncertain whether I had overlap syndrome or severe linear scleroderma. I was transferred again, this time to an internal medicine and rheumatology ward. After two weeks, I was finally diagnosed with MCTD. As far as I could understand, it was neither severe linear scleroderma nor SLE. I was not sure which diagnosis had the worst prognosis, and I was desperate to know what to believe as different diagnoses had been made in different hospitals. Only now do I understand that differential diagnosis in the connective tissue disorders is not easy.

After being discharged from the hospital in 1994, I was really down. I did not know what to expect. My brother, who had been living with me, left the country. I was alone with my disease, which I hated and did not want to accept. Constant pain in my joints, as well as ever-increasing hardening of the skin of my leg and arm, were efficient reminders that I was ill. I did not believe I had any chance to have a normal life; the future did not exist for me. I stopped all treatment and started to drink alcohol; I did not care for anything. I drank and when my joint pain was worse, I took steroids.

After some time, my leg appeared burned. There was muscular atrophy and the skin was extremely hard, in particular over my right leg. In order to forget, I drank even more. The summer was the worst season for me. I was condemned to sweat, wearing long trousers and long-sleeved shirts. Walking around the city and seeing smiling and normally dressed people, I felt sad I was not a part of them anymore. Alcohol became my best friend.

After two or three months, my rheumatic symptoms decreased, appearing only from time to time. I managed to get used to them. From 1994 to 1998, my life did not have any sense. I lived day by day and I was thinking of how to die. Then I realized I was pregnant; an event that restored my desire to live. I felt as if I had been born again. I was very happy but also worried for my unborn child because I had abandoned treatment for so long. Surprisingly, alcohol had not caused any particular changes in my body.

My disease seemed to stop for a while, but not for long. I would never have thought that with this disease I would still be able to have a child. I very much wanted a girl. My disease was quiescent during pregnancy. I was feeling like a normal, healthy woman who was carrying a new life inside her. I realized I had given up too early and lost hope, which is so necessary for treatment. I did not give myself a chance for a normal life. I had been destroying myself.

It was my pregnancy that changed everything, and it was a beginning of my new life with a desire to fight against my disease. During nine months of pregnancy, I was taking care of my baby and myself, and everything was going very well. I did not let myself think something could go wrong; I just believed that my child would make me happy; that hope can make miracles. Finally, the day of delivery came and I gave a birth to a healthy girl. It was the happiest day in my entire life. Now I had somebody to live for.

On New Year's Eve, 1998, I met a man and we fell in love. He also has changed my life.

Several months later, my disease started to upset me again and put me down. I could not get out of bed and needed hospital care. After two weeks I was discharged, but this time I decided to follow the treatment plan since there was someone who needed me.

One year later we got married. My husband accepts me as I am. I realized that external appearance is not so important and what really counts is a family and love, without which life is hard, whether or not you are sick or healthy. Thanks to my husband, I have accepted myself.

In 2001, in the dermatology department, a diagnosis of a quiescent localized scleroderma of my right leg and arm was made; the treatment required only an organized lifestyle and careful skin care. I am currently undergoing a specialist's treatment for my rheumatic disturbances.

In spite of many bad experiences, I am happy that my life has gained its sense of purpose again. I realized it is not worthwhile to give up. Even during the most difficult moments, it is necessary to fight and to believe that it will be better. If I had not believed, I would not be alive now. My daughter is now three and a half years old, and my husband and I are hoping to have another child. I now know that my disease is not hereditary and that a healthy mother can give a birth to a sick child, the same as a sick mother can have a healthy child.

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This Story is Featured in Voices of Scleroderma Volume 1

The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!

ISN Story Editor: Judith Thompson Devlin

Judith 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!

SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.