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Fred: Future Spouse of Scleroderma Patient
Portugal: Week 10 out of 40

Scottish Teddies by Sherrill Knaggs, ISN Artist I met a girl five months ago and immediately fell deeply in love with her. I did not immediately notice that something was wrong with her hands and her face. I just thought her hands were dry and needed some kind of hydration. I advised her to use some hydrating lotion but her reaction was aggressive and weird. I did not give much importance to her response and our relation followed a normal course with ups and downs like most of them do.

It took her some time to tell me about her problem but she did not give me many details. She told me she had a rare disease named 'esclerodermia ', the Portuguese word for scleroderma. I regret that I did not give much importance to this fact. I thought it was a 'no big deal' disease.

On one of those days at work with not much to do, I decided to search for information on the internet about her problem. I was frustrated because I could not even remember the name of the disease. After many trials in a popular search engine I finally remembered the name 'esclerodermia'. Soon after I found the English name 'scleroderma'.

I finally realized what her problem really was and the suffering it caused to her in the past and in some way still does at the present. Sometimes we speak about her problem but I try not to ask too many questions because I feel it can hurt her. I prefer to gather information on the web and learn as much as I can. I am certain it will be useful to us in the future. However, I am afraid that she does not know what she should know about her disease. She does not even know if she has localized or systemic scleroderma.

Two months ago, magic happened. She became pregnant. It was very early in the relationship, but I feel this was the best thing that could happen to us. I have read all those articles about pregnancy and scleroderma and most of my initial scares faded a little. The percentage of success is high and I feel optimistic that her pregnancy will have an happy ending both to her and the baby.

I just hope that I will have all the strength in the world to help her if things do not turn out the way we dream.

To Contact the Author
Fred
Email: fsmonteiro@hotmail.com
Story edited 12-07-04
Story posted 12-12-04 SLE

ISN Senior Artist: Sherrill Knaggs
Story Editor: Judith Devlin
LINKS
(Português) Escleroderma de A a Z
Localized Scleroderma
Pregnancy and Scleroderma
What is Scleroderma?
Systemic Scleroderma
PDF Brochure: What is Scleroderma?
ISN Artist: Sherrill Knaggs (In Loving Memory)
Sherrill Knaggs 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 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 !
New Personal Stories
Alana: Scleroderma (Peru) I cannot open my mouth completely, I have lost strength in my hands, I have breathing problems, my face looks different, my skin is really tight and I have lost my appetite...
(Español/Spanish) Alana: Paciente Nuevo con Esclerodermia (Peru) Le dije que ya no podía abrir la boca completamente, he perdido la fuerza de las manos, tengo problemas respiratorios, mi rosto está diferente, mi piel está dura y he perdido casi el apetito...
Kristy C: Generalized Morphea The only place where I do not have any morphea is my face, which I am very thankful for...
(Update) Raymond: Surviving Son of Scleroderma Patient On October 19th, the Herbert family lost another member of the family to scleroderma. My uncle Edmond has passed on...
Sharon H: Scleroderma/Morphea It has been thirty-two years living with this and it has progressively gotten much worse and has spread...
Teena: En Coup De Sabre My mother and I went to Johns Hopkins Hospital. They did what was called 'Grand Rounds' where about fifty doctors were looking at me taking pictures and videotaping me...
More New Stories: November 2008
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