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Ewa: Mother of Localized Scleroderma Patient

Poland

Six Eggs by Gene Ensz for EwyMy experience of scleroderma started four and a half years ago in November 1997. At that time our son Albert was born, our long awaited and beloved child. In the beginning, that is to say in his first month, our life was a fairy tale, unimaginable happiness and good fortune that we had this beautiful and strong little boy, 4000 g birth weight and 57 cm long at birth. According to the APGAR scale he had 8 points at birth, but, so what? A bluish leg and a problem with his testicles, it was nothing and in fact, his testicles came back to normal in a week. His little leg did not. One month after his birth little Albert was referred to hospital with aspiration pneumonia: he was always coughing up milk when he was feeding, but he was growing normally and put on 2 kg in a month. And that is the end and the beginning.

Albert's father's concerns that one leg was thinner than the other were dismissed by his doctor as being a part of Alberts nature and the fact that the skin of one of his legs was marbled was again "inventing a disease in a child". After a week in the hospital Albert's father and I were exhausted and questioning what was happening and why the doctors behaved as they did. We lived like that for a year and nothing particular happened.

At three months Albert was sitting, after nine months he was walking and by one year he was an active walker, but he did not speak and was often ill. Besides that everything was going very well, with the exception of our trip to the children's hospital where many tests were performed to discover why one of his legs was dry, gray (rather marbled), a little bit deformed and thin, whilst the other was pink, soft and plump as a babys should be.

When Albert was 15 months old we noticed that he was behaving in a strange way and when I spoke to his doctor, he said it might be epilepsy, but not to worry. I could not stop thinking about this opinion and I took my son to be seen privately by a pediatric neurologist in Olsztyn. There, after having listened to me, the doctor sent him immediately for an EEG. It turned out that my instinct was right and that Albert really suffers from epilepsy. It was fortunate that I observed his symptoms early; he has been taking drugs since and everything is now okay.

In the meantime, on his sick leg, a 1.5 x 2 cm lesion appeared; it looked strange surrounded by a red "frame", thick, rough, and itchy. I saw a dermatologist who prescribed Elocon cream. At the beginning there was an improvement because the lesion was not red anymore; but unfortunately, when the cream was applied it was causing him pain and burning. Furthermore, Albert started to wake screaming say that his entire leg hurt him! That seemed strange, the dermatologist was changing the creams, prescribing different lotions and bath oils with no effect, the lesion was growing and growing and the pain was getting stronger and stronger.

In the meantime, Asia, Albert's sister, was born, but despite it Albert was not weaned until he was four years old. One day Asia got a generalized rash. My husband and I had had enough of "chasing the wind" in Giżycko's Health Centers and while seeing a neurologist in Olsztyn we decided to see a dermatologist there. And then it happened! After we had entered the office, it turned out that Asias rash was due to something I had eaten, but when I asked the doctor to give an opinion on Albert's problem, without much thought she called a rheumatologist for consultation. At the end I sat and cried and the doctor was writing a referral for Warsaw as Albert was diagnosed with scleroderma. I did not know what this disease was but the doctor said, "If we manage to organize everything quickly nothing bad will happen to him, but this is an incurable disease, and in some cases is fatal." This sentence only caused me not to be able to control my tears, and I already I hated this scleroderma.

We traveled to Warsaw where one doctor started to yell at us saying that it is too late, and that was very bad that Albert had been vaccinated and so on. Later on in a hospital room when I asked,"What does scleroderma mean?" I heard a sentence that was the beginning of the end: "I know some people who like Albert have scleroderma and despite it have started a family," and I had been told that he was dying…

After a series of tests it turned out that Albert has Raynaud's phenomenon, with some loops in his nails. He was prescribed different drugs and treatments: massage, laser, gymnastics, swimming, hydrotherapy. We were sent back home. One year after our visit to Warsaw the lesion, already 10 cm in size, faded and almost completely disappeared. It left behind a strange scar and gray hairy skin. Now, even if we have to travel to the rheumatologist in Olsztyn, everything is all right with the boy but my instinct does not let me feel that everything will be all right. I constantly hear the doctors' words in my head and wonder what else can I do for my son. He now has an insert in his right shoe to compensate for the shortness of the leg. I have made the insert for the entire foot, despite the doctor's advice to use a 1.5 cm insert only under the heel. I am afraid that every cough is not just a cold but will start the disease again. When my son is well behaved I wonder if he is already ill.

Despite all my worries he is a normal boy who makes mischief at any time. He is scared of having blood taken so we do the blood tests every four or five months and not every month. The summer is coming so he will need a sun cream with a high protection again on his leg, and with low protection for the other leg so that both legs have similar color. He will be again able to swim in the lake every day. In two years time when he starts school then maybe nobody will realize that he is different during sports lessons. His leg pains do not happen so often now; the skin after laser therapy is whiter and the hairs are lighter and finer. Lipobase cream makes his skin soft; playing scooter keeps his leg fit, bicycling helps joint mobility, swimming gives him pleasure and makes him fit and now he is very strong. The Kangaroo ball is irreplaceable, and what Albert likes most is when he can apply the lotion on his leg. That is when he touches his little bones and says, These are the bones of my body, this part is hard and this is soft." Recently he told a woman we know who has a six month old son that, "If Macius' also has a painful leg I will give him a cream to drive the pain away."

Scleroderma for me is something that causes my little son to wear an orthopedic shoe and makes him different from other boys.For Albert this is something that is natural and obvious and he pays it no attention. Only sometimes when he plays in the yard I can hear his friends asking: "Why do you have such leg?" and his answer: "Because this is my body and it has to be hard!"

To Contact the Author

Ewy
New email address needed 07-19-06 SLE
Old Email Prefix: balicka
Story submitted 4-26-02
Story posted in Polish 5-5-02

Story translated into English by
Dr. Magdalena Dziadzio and
Dr. Roy Smith
on 9-22-02.
Photo "Six Eggs" by Gene Ensz.
LINKS
Localized Scleroderma
Juvenile Scleroderma
Raynaud's phenomenon
Historia Ewy (Polski)
Sklerodermia od A do Z (Polski)

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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In Loving Memory

Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
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