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Nathalie: Scleroderma/Lupus

Switzerland

My name is Nathalie and I am twenty-eight years old. I was diagnosed with scleroderma / lupus about six months ago. In fact, on the 29th of January 2002, I arrived at the hospital with two black fingers. They had gangrene and I was very worried about having an amputation. I could not possibly imagine my life with some fingers cut off. But today five of my fingers have been partially amputated. I am even relieved about that because it was very difficult and painful to live with gangrened fingers. Now I accept my hands as they are and I can handle everything as I could before.

Let me tell you my story from the beginning. Four years ago the doctors found out that I did not have enough platelets in my blood and that it was due to the fact that I had too many antibodies. So I had to take Prednisone, which is a derivative from cortisone. But as soon as I stopped this medicine, my platelets went down again. As a consequence the doctors decided to take out my spleen. After the operation the doctors told me I might have Lupus, but they gave me no more information, just that I regularly need to have my platelets checked, which is what I did.

Now just imagine, I was 24-years-old, still studying and I wanted to enjoy life. For four years I led a happy and interesting life. Nevertheless, I had some symptoms during that time which are typically linked to Lupus: Raynaud's phenomenon, swelling of knees, loss of hair, mouth ulcer (in the form of herpes), infection under some fingernails and two big holes in my left leg.

Every time I talked to the doctor about those symptoms, he said to me that it was nothing worth being worried about. I sometimes complained about my extremely cold hands turning white, yellow, orange and then blue and his answer was that it was due to stress. I told him about my infection under some fingernails and he said it would go away with time. I did not know that Lupus or scleroderma were the cause of my blue hands. I now realized that I suffered a lot from this lack of information. Every time I talked to the doctor about my symptoms I felt stupid and I thought that I was complaining about small things.

During the year 2001, I finished my studies and I started working as a teacher at a high school. I taught geography and English. In November of the same year, I absolutely wanted to heal the infection under my fingernail. So I decided to change my doctor and went to see three other doctors. From then on I saw a doctor almost every week until the 29th of January. During the month of January, it was extremely cold. The cold was almost killing me and my infection under the fingernails hurt me so much that I could not sleep at night. For me it is still very painful to remember that period of time, because I told my doctor that I had the impression that there was no blood in my little finger any more. He said to me: "I'm not going to give you some medicine because you have cold hands." Two weeks later I had to go to hospital with two black fingers.

This day was a terrible day for me. The doctors told me I had an incurable disease and that I had to stay in hospital for a while (seven weeks altogether). I was very sad and angry because I had just started working and my boyfriend and I had decided to get married in March and to have a big party. Many questions were going through my head:
- Am I worth living?
- Am I going to die?
- Why should they keep me at work if I am a diseased person?

At the beginning it was very difficult for me. I realized that my disease, Lupus, scleroderma or whatever, even the doctors don't know how to call my disease, would not go away and that I have to live with it for quite a while. During my stay in the hospital I was lucky because my husband, my family and friends gave me great support. A lot of people visited me every day during the five weeks! But imagine; I had black fingers and nobody had ever seen that before. So I had to face many reactions. Some people cried (even some men!), some were very surprised, some did not show anything. What I hated most was to hear the sentence: "Oh poor girl, you are really unlucky."

It was also very difficult for my parents to accept that their daughter had an incurable disease. At the beginning, I sometimes had the impression that it was more difficult for them than for me to accept the fact. After many long discussions and sometimes even quarrels, we would find a solution and now my relationship with them is better than it was before.

Concerning my husband (we finally married on March the 29th, but we did not have a big party), he has always accepted me as I was. He helped me through very difficult times.

In the hospital I was treated by a psychiatrist who helped me a lot, especially in accepting my disease. I could simply talk about my family problems and other things which bothered me. We practiced hypnosis. I imagined my blood "flowing" better and better in my veins and reaching my fingers. We also tried to fight the pain. In fact my gangrened fingers had been very painful for three months. After the amputations (I had to go back twice to hospital for that) the pain went away and I feel so good about it. Every day I appreciate this fact.

Since May, I have been leading a "normal" life again. Of course, as I came out of the hospital I had to tell my story several times. But now that my fingers have healed well, I think people rarely notice my "strange" hands any more. Today I like my hands because I can use them as before. And that is more important than the physical aspect.

Today I have accepted my disease and I have to live with it. I think that in the future I will be able to live quite a normal life. Of course I will have to see the doctors regularly. I also have to stay in the hospital every six weeks for three days (I can go home for the night). I am a bit worried about it, because I do not know how I am going to reconcile this fact with my work. But I am sure there's a solution.

I also ask myself if I will be able to manage this illness for a long time in the future. In my bad luck, I am still lucky because my internal organs have not been attacked by the disease. My lung capacity is reduced, but my kidneys work well and that is very important to me. I still can do everything I did before. So I have decided to take the best out of my illness and to be in good spirits. Sometimes I am angry with myself because I might not have acted early enough with my fingers. But then I think, I went to see the doctors all the time. One doctor admitted that they had lost too much time with me. Maybe if they had taken my symptoms more seriously, earlier, they could have prevented the gangrene. But I think now it is not worth thinking about that. But for me it is very important to write my story because I think that I have been a victim of lack of information and especially of medical carelessness.

Now, I really wish to have children. The doctors told me that I have to wait at least one year and then we will see. But the day I can hold my little baby in my hands, will be a real victory for me, my victory!

~ Update 11-09-04 ~

I am the happy mother of Nathan. He was born on September 28th of this year. Since he is a premature baby he had to stay at hospital for one month. But we could take him home last Saturday. The pregnancy went well, I really felt good during that time. The contractions began in the thirty-second week of the pregnancy, and he was born two and a half weeks later.

I wish you all the best.

To Contact the Author

ISN Artist: Sherrill Knaggs (In Loving Memory)

Sherrill 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

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!

ISN's Voices of Scleroderma Volume 2

The story on this page is featured in our book, Voices of Scleroderma Volume 2! ISN.

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