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(English) Arianna: Early Limited Systemic Sclerosis

With lung involvement, recent alveolitis, and grade II esophagitis with hiatus hernia

Flower for Arianna by Shelley Ensz My name is Arianna and I am a twenty-six-year-old woman. In September 2000, I was finally diagnosed with a form of progressive systemic sclerosis, but everything had started a good three years earlier with the sudden whitening of a finger while I was walking along the street downtown with my university friends.

When I told my family doctor about this strange phenomenon, he replied that I should wear gloves because it was cold outside! After a few months, other fingers became affected by this phenomenon, this time associated with pain. Nothing! No one could tell me what it was!

Suddenly in April 2000, I started to feel generally stiff. I could not bend over to carry out the usual domestic tasks, my ankles were always swollen and my hands began to deform and swell. My mother noticed a certain change in my face, as my nose got thinner and my mouth became tighter. I got to the point where I could not get up from a chair without grabbing hold of something to pull myself up.

I felt humiliated! How was it possible that a girl of twenty-four could have the energy of an eighty-year-old?

Without sending me for tests, my doctor told me that maybe I had rheumatoid arthritis. Everything changed after I met my current rheumatologist, who understood the cause of my suffering by simply looking at my face. Now I take so many medicines that I cannot keep count of them, and I have physiotherapy.

I have met some wonderful people; the doctors at the hospital, the nurses and the physiotherapists, and the patients at the day hospital. Unfortunately, all this is still not enough, as the disease is not going into remission. On the contrary, it is progressing inexorably.

Last month, my rheumatologist told me that I have an inflammation of the lungs, and that if I do not want to end up on oxygen therapy, I have to start a new treatment that can have serious side effects on my ovaries.

The world fell down on me. I had still hoped to live a normal life, marry and have children! Maybe I was a bit presumptuous, but thinking about everything again now, what I want is to struggle against this disease to stop it from beating me.

I hope I have not bored you too much. I love you all!

To Contact the Author

Arianna
Old Email Prefix: arianna129
Story posted 2-1-02
Story edited 3-16-02
Story translation by Kevin Howell posted 6-18-02
Story edited V1 8-03-03
New email address needed 05-01-08 SLE

Story Artist: Shelley Ensz
Story Editor: Judith Devlin
Story Translator: Kevin Howell
LINKS
Italiano) Arianna: Early LcSSc
(Italiano) Sclerodermia dalla A alla Z
Systemic Sclerosis
Lung Fibrosis
What is Scleroderma?

This Story is Featured in Voices of Scleroderma Volume 1

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 Translator: Kevin Howell

Kevin Howell is the ISN Translator (Italian to English) for this story. He is a Clinical Scientist for Professor Black at the Royal Free Hospital in London.

ISN Story Editor: Judith Thompson Devlin

Judith Rose ThompsonJudith 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!

2014 New Personal Stories

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